(Inside: Please do not light it up blue for my son for Autism Awareness day. There are so many ways to help autistic people, but that is not one of them!)
We are getting close to Autism Awareness Month, and I should be ecstatic.
I am supposed to be sooooo excited that for one month the whole world turns its sights towards inspirational stories of inclusion and feels good about themselves because they “light it up blue” for awareness on April 2nd each year.
But can I just say, please don’t.
As the mother of an autistic son, and an autistic person myself, I cannot express to you enough how frustrating it is when I see everything blue on April 2nd each year.
Honestly, I do my best to stay off of social media that day, and my poor husband hears me rant at least 3 times throughout the day.
Listen, I get it. It feels nice to do things that we can consider activism without really thinking about the impact, or lack of impact, that it may have.
So before you change your profile image this April, check out these 5 shocking reasons NOT to light it up blue for Autism Day.
5 Shocking Reasons NOT to Light it Up Blue for Autism Day
If we haven’t met yet, hey friend, I’m Kaylene!
I’m an Autistic mom of six neurodivergent kids and a parent coach that helps parent-advocates parent their Autistic child with more ease.
And since it’s Autism Acceptance Month, I’m hosting a brand new event, and I want to invite you!
Here’s what I’m talking about: Embracing Autism Live!
It’s a one-day virtual event designed to help you create your custom plan to parent your Autistic child with ease. And you can get your Early Bird ticket for just $19!
Click here for all the details!
And now let’s dive into the 5 reasons NOT to Light It Up Blue this year!
#1 “Light it Up Blue” is from Autism Speaks
I know, I know. I can’t talk about autism speaks without getting a bit rant-y.
I’ve written a whole post about it here, but the long story short is this. They’re a horrible, disgusting organization.
Their main goal is to “end autism” and almost none of their massive budget goes towards actually helping autistic people and their families.
A huge portion of their budget goes towards research for a “cure” or a pre-natal test for autism so that women could choose to not have their autistic babies.
They also spend an insane amount of money on their marketing, including some terrible marketing materials that paint autism as some evil monster that wants to come steal your children.
It’s absolutely horrible. Just don’t support them. Just don’t.
(An alternative organization, if you’d like to donate is the Autistic Self Advocacy Network.)
#2 Social Media Activism Without Understanding Doesn’t Help Anyone
Here’s the thing. I’m sure Facebook will make some nifty app that lets you change your profile picture blue, and I’m sure #lightitupblue will be trending on twitter.
Guess what? Being a social media activist who doesn’t understand the cause truly doesn’t help anyone.
It certainly doesn’t help autistic people or their families.
Instead of posting a status or using that hashtag, why not donate to an autism organization?
Why not actually support a local family who has an autistic child?
Posting on social media about “awareness” does absolutely nothing to help anyone. Sorry to break it to you.
(Editing to clarify, social media can be an effective part of activism. I am referring to people who do nothing for a cause and don’t care about a cause until it’s the popular thing to do on Facebook.)
#3 Light It Up Blue is Based on Harmful Stereotypes
Did you ever wonder why blue is the color of choice for the autism awareness day?
You may have heard that autism is much more likely in boys than girls.
This is actually a widely debated statistic that’s come about because the diagnostic criteria used to diagnose autism is written towards boys typical behavior.
Autistic girls often go without diagnosis and when they are diagnosed people tend to ignore their differences and needs.
I learned that I’m autistic as an adult, and only because we got the diagnosis for my son who has more “classic” autism signs.
The fact is that girls can be autistic, it isn’t just a “boys disorder”. It isn’t something to be cloaked in blue and stereotyped.
#4 Everyone is Aware of Autism
I get it. Posting on social media helps to spread “awareness”.
But I would be willing to bet that 99.99% of people on your social media lists are aware of autism.
In the 80s? It wasn’t so well known. But nowadays not only does nearly everyone know what autism is, they’re typically connected to someone with autism in some way shape or form.
We don’t need more awareness, we need more understanding.
We need to hear and learn more from disabled advocates.
We need to fight for more accessibility and fight against discrimination.
We’re all aware of autism, but it’s time to truly accept it.
#5 What Do You Do All Year?
Did you know that autistic people are here all year long?
Our struggles and our triumphs don’t begin and end in the month of April.
How are you being more aware and accepting of autistic people and their families all year?
Does your church have a special needs ministry? Have you ever even thought to check if your church has a special needs ministry?
What types of adaptive programs are available for children with disabilities in your area?
How many disabled adults are employed where you work?
Is there a kid in your child’s class that doesn’t get invited for playdates? How can you reach out and help them connect?
These are the things that we need to be more aware of, and we need to do things to fix them.
Don’t light it up blue, do something. Make a difference.
I’m honestly sorry if this post ruffles some feathers. Like I’ve said, I’m not a popular autism mama.
I don’t support autism speaks. I support my son.
I will fight for him to be accepted. I will fight for him to have opportunities. I will fight for him.
I will not light it up blue.
If you REALLY want to help spread true acceptance and understanding, grab your FREE autism signs cheat sheet and share it with everyone you know. Help your friends, family, teachers, and more learn true signs that a child may be autistic.
If you loved this post, you might also enjoy…
- 4 Reasons I Don’t Support Autism Speaks
- 5 Things to Do Instead of Light It Up Blue
- We Need to Chat About Being an “Autism Mom”
- Stop Telling Me You Aren’t Ableist and Start Doing This Instead
- Dear Autism Mom That’s Afraid of Autistics, From an Autistic Who Wants To Help
Yes! I hate social media activism too although, to be honest, I wasn’t aware that Light it up Blue was a thing. I’m so sorry that you have to deal with this craziness on top of taking care of your precious little man! <3
I didn’t know it was a thing until a few years ago, and unfortunately, I didn’t know it was tied to autism speaks until last year! I just try to stay off of social media for the day as much as possible (it’s hard as a blogger!) and post things like this to try to educate people. <3 Thank you for your kind comment! (I was a bit nervous posting this!)
Actually you are wrong. NOT everyone knows about Autism and knowing helps with acceptance. So you can rant but as a newly diagnosed mother I had no clue what to do or how to prescreen or what steps to take or without the help of Autism Speaks so please know that good is done.
Nicole, welcome to the autism family. It can be very overwhelming starting out after the initial diagnosis. You may want to contact your autism society in whichever state you reside as well as the national autism society. They can help with resources available in your area. Also look on Facebook. There are autism groups all over the place to connect with other parents of children with autism.
Yes!What’s so crazy about it!? As a mother of 2 Autistic adults, I love it! Spread awareness so that our loved ones don’t suffer from bullies like mine did in the early 90’s. Get the word out! Light it up blue!!!!!!!!!
i thought Autism was a puzzle piece of colors. At least in Alaska thats what we support around. Please tell me what this light it up blue is all about
I though blue signifies calmness, not gender… I’m
an autism Mom, I say light it up blue too! Nothing wrong with celebrating diffences! I think showing some compassion and support is a good thing… at least people can do that much. I also think it’s kind of rude to sh*t on everyone’s good intentions and ask for $ instead.
I’ve been in your shoes and still am alot of times. And your right alot of people don’t know about it. I didnt till I found out my son has it. In May my son has been diagnosed for 2 yrs and everyday I struggle and still trying to learn all I can bput it. And raising awaness to other people might people understand and be able to help. Then maybe we wouldnt see so many sad stories of them being bullied. And maybe if people knew more right info about it the communities can do better. 1 day at a time
I have never heard of this but I do agree with you my son hates being labeled as disabled and sometimes refuses help as hewants to learn life and how to cope just like everyone else, he is just different and would like people to understand how he is different. We have as everyone had our ups and downs but overall I amreally proud of him and would never want him any other way.
Wow..i am an autism mom..i fully support this cause..
What’s so crazy about it!? As a mother of 2 Autistic adults, I love it! Spread awareness so that our loved ones don’t suffer from bullies like mine did in the early 90’s. Get the word out! Light it up blue!!!!!!!!!
I’m sorry, Kaylene, but I deeply disagree. I am a retired special educator who worked from the days when children were shut away in special schools to the days when our district believed that inclusion was a given. At the same time, we respected each child’s disability, and if there were times when being included in an activity was just too difficult, we found another activity within the building for them to do. My church is in a different town and I have been highly involved, but there has never been discussion of special needs ministry. All are welcomed to participate, and modifications and accommodations are made when any person needs them. I think Light it up Blue is a good effort to expand peoples’s awareness, and it came along well after we knew that there are a high number of girls who have been identified. We have Mother’s Day, President’s Day, Fire Prevention Month, and others; why not enlighten, literally, people around the world about Autism by lighting it up blue? It increases awareness, and I think it speaks of God’s love, because people don’t have to do it, but they’re choosing to do it globally. It’s a start for some, it’s an expansion for others, and for many, like me, it’s a celebration of how far we’ve come. I wish you and your family well, and I pray that your son gets a chance to benefit from those of us who love and include without a second thought.
I agree Lisa.
If you had actually read the article, you would know that autism speaks is an evil oppressive organization focused on during a personality not a disease
Autism is NOT a disease. It is a neurological disorder that affects mainly boys, with girls being a small percentage affected. I am a 60 year old mother of a 31 year old son with Autism. Plus I have an 8 year old grandson and a 3 year old grandson with Autism. Your remarks against Autism Speaks, are unjustified and out of line. I have spent my last 30 years learning everything that there is to know on the subject of Autism. We light up blue for the entire month. Not everyone knows that Autism even exists, or what it is. Instead of griping about another groups ethics, you need to first look at the ethics behind your blog. 2nd get yourself educated. Autism will never go away, and the more we can learn and share, the better off everyone will be.
That’s very well put Mary
It’s agreed. Autism Speaks is a real POS organization.
Right Rosa, Light it up Blue, this the most one-sided, insulting post I have ever seen in regards to Autism. Everyone is entitled to their opinion and beliefs.
My 10 year old brother is autistic. Our family have learned and grew with him his whole life about autism. We teach people and his friends about what Jordan has and why he may learn, act and do things differently. You have to be AWARE to ACCEPT something. So I don’t have an issue with spreading awareness, the amount of dirty looks from fully grown adults and confused kids because he may be having a meltdown in public over a small thing or silent when they say hello and they don’t understand what autism looks like and why jordan is the way he is. He loves getting creative so we paint rocks and hide them for others to find and done a couple autism inspired. A couple other mums and kids and my brother has t-shirts made with ‘Autism is my Superpower’ he loves wearing it everywhere. Me giving donations isn’t helping him feel more loved and accepted. Any step forward to educate is good even if it starts for some with a small Facebook profile filter for some.
Let’s light it up orange, the complimentary color to blue!
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I love orange. :) It was my school color in junior high!
Autistic self-advocates have chosen red as the opposite colour to blue. The campaign is called Red Instead.
Here in the UK we have voted for gold (it’s also a pun on Au )
Gold is perfect.
My son was just diagnosed at age 22. It explains so much! We are just learning about various organizations
I’m sorry you feel this way. And yes it does drive me crazy to see people just jump on the band wagon on social media. You never know who is truly invested in WANTING to become aware and actually wanting to help or just wanting social media attention. But sadly that’s with EVERYTHING, not just autism awareness, breast cancer awareness, now down syndrome awareness, heart disease, etc. I LOVED what you had to say and its people like you who I believe should remind others of what the real point about all this AWARENESS is. I have family with ALL types of disabilities and I myself work specifically with autistic children and I come across people such as those you speak of all the time. So I take it upon myself to “correct” what Autism Awareness is SUPPOSED to be about.
All I can say is GREAT JOB in explaining what Autism Awareness really is ? and to try your best to not get so upset and to remember there ARE people who TRULY DO WANT TO HELP but don’t know anything or know how to go about doing so, just as I’ve read in some responses already. All we can do is keep TRYING to get the word out there. So thank you for this. And fyi I wouldn’t have ever read this if it wasn’t on social media…
This is by far not an issue unique to autism. The whole world turns pink in October, but very little is actually done to support breast cancer from certain organizations. The overwhelming majority of people that I’ve heard from that have read this truly thought they were helping but don’t know how. That’s why I wrote this. People assume that supporting autism speaks is supporting autistic people in their families. People honestly just don’t know what’s happening behind the scenes unless they’re living in it, so those of us who do know need to spread the word.
Where can I find documentation regarding the information you’ve posted about Autism Speaks? I totally believe you, it’s not about that, I just want to “do something”. My son is autistic, and this royally hacks me off. I’m thinking by the time April rolls around, I can have something planned, that might actually make a “real” difference. I’m no one special, and whatever I can come up with will only be on a local level, but it has to start somewhere, even if it’s small. I appreciate this post because I honestly had NO idea.
I truely so agree with you and do not support autism speaks and I will go red instead me or my husband don’t like autism speaks and the light it up blue is just tied to them 😠😣
I agree with you and have been feeling this way for years. I really feel that this population is exploited by this organization and I resent people who don’t spend the sleepless nights, work, worry, sacrifice making huge salaries all due to these individuals with a disability. These people and families deserve better So much about autism speaks is disrespectful and lacks dignity to their fellow man. This should come first. I love what you say about really doing something, even as small as inviting these kids to a birthday party. This is one way we can bring more than just “awareness”. What good is awareness if it stops there?
This is a great post Kaylene and sums up my thoughts on autism awareness and light it up blue. Last year, our main autism advocacy organisation in Australia asked people to be colourful rather than to light it up blue. It was a great way for them to differentiate themselves from Autism Speaks. I’ll be sharing this with my network as it explains the issue beautifully – thanks for writing this!
Oh I love that! My A-Man’s favorite color is rainbow, so this is a great alternative!!
I understand what you are saying about the Autism Speaks organization and I understand. The tone of this piece, however, was quite negative and a lot of people are probably not going to read all of it. I have an autistic daughter, nephew, and have worked in special education for 15 years and I do believe that, yes, we need to continue to build awareness which will lead to more acceptance. In order to do that we need to express our feelings and ideas on the issue in a way that people are going to listen, yelling or ranting does not help.
Thank you for your feedback, Tricia. I do agree that the tone of this piece isn’t very friendly. It was written in a moment of frustration and desperation. However, it has been very well received by the majority of readers. I did not mean this to be seen as yelling or ranting, but more pleading. It is a topic I’m extremely passionate about and I want people to hear the other side. Autism speaks is heard everywhere all the time, and I’m trying to give the other side a voice.
I agree. And I understand both sides. It’s been frustrating seeing year after year rejection toward my son and then toward our entire family. He’s 18 now. Those who’ve rejected us will light it up blue and I’ll know personally who they truly are. We’ve learned to move forward from fake supporters who run from us, not trying to even discover how cool my child is, how brilliant he is. They’ve just ignored him which makes developing social skills that much more challenging. So I’m not feeling like I want to celebrate blue right now but for my family and the way we’ve made life positive and happy for all of us, I’ll celebrate autism and light it up blue.
Man, this stirs up so many memories and heartache from the continuous rejections, it truly hurts. He won’t go to prom, senior week, or safe n same because no one will allow him to go with them. But I must remain focused on my son’s crazy successes as he heads off to college in the fall on academic scholarship because of his intellect. Again, I’ll celebrate world autism day.
I have a son who is Autistic. I have known since he was very young, however he is very high functioning so I never pushed for a diagnosis. Once we hit the teenage years his whole life turned upside down and inside out. I took him for testing and in the first 5 minutes they knew he was autistic. I do not light it up. My reasons are almost parallel to yours. We need to teach acceptance, to teach how to interact and how to become friends with our precious children, not turn everything blue, and wear t-shirts with puzzle pieces.
Thank you for sharing
I completely agree with you. Acceptance is so much bigger than awareness!
This makes absolutely no sense. How can you accept without being aware? You must have awareness to show acceptance!
Acceptance is the best word here. Thanks. That rejection toward my son, and often times the entire family, has been painful. But our family is strong and full of love. Acceptance.
I have a 39 year old son who is autistic, and I believe I myself am autistic, but at age 57.
…..it probably won’t ever be diagnosed. My son is FABULOUS , smart, funny, and loves other people, he has an I.Q. that would put Albert Einstein to shame, by the way, it is believed that Einstein was autistic too.
All he has ever wanted in life was to be accepted, to be friends with someone his own age.
Autism speaks is not a place that was or is a source of help or encouragement
I’m very happy they could help someone, but that is a rare thing.
Now my rant is over…..
I have blue lights up all year round for both my husband and for my son!! I DO NOT support Autism Speaks after I read more about them…but I DO support my son and my husband. The blue for us is two things…..For Autism Awareness AND to show support for the men and women in blue that risk their lives every day. I understand your difficulties….BUT I have found that most persons in the Autism community DO NOT support one another. They back stab, they speak horribly about one another and I will NOT have my family exposed to it!! I will show my support for Autism, as I always do…every single day of every single year!! Thank you for this post….it was wonderful to read your thoughts!! Bless you and your son…I will keep you in my prayers ma’am!!
That’s so interesting, Sandy. I am very glad you don’t support autism speaks. I think that it’s so important to fight not only for awareness but acceptance. I also have found that the autistic community is wonderful. They build each other up and work to make their voices heard. The community around autism which excludes self-advocates and attempts to speak only to and through parents is the community you’ve described.
Our family did both. Autism Speaks does a lot of good things. We did the Light up Blue thing – and we also gave a donation . The walk was fun for the children. My grandson had a ball in the jump houses and there were activities for the kids.
Love seeing this from your perspective! I don’t have an autistic family member, but do work with many autistic children at my school. I agree that most people have heard of autism…but I would venture to say that many people still do not really know what it is or the effects it has on a family unless someone very close to them has the diagnosis.
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Jamie, you’re absolutely right. Most people either know about high functioning autistic people (and they consider people with autism to just be “odd” or “quirky”) or they know about low functioning autistic people (and they believe that people with autism are severely disabled and tragic). I think that there is a large need for more understanding of autism as a spectrum, and how to help and support those with autism and their families. Thank you for adding your perspective. <3
I am autistic myself but I don’t see a problem with autism speaks. I would never “cure” my autism but I can see why it has support. Autism is a spectrum that varies from just being socially awkward with some minor stimming to having serious affects that ruins the quality of life for an autistic person. I definitely don’t think people with autism should be forced to take a vaccine or it but I do believe the option should be available.
That isn’t the only reason Autism Speaks is a POS organization. Here’s an open letter put out some years ago (sadly, AS has gotten WORSE in the years since):
To the Sponsors, Donors, and Supporters of Autism Speaks:
We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.
Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.
Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks. We believe this is not the type of action you anticipated when you agreed to provide support to Autism Speaks events.
Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community. In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.
Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos, an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.
Autism Speaks’ only advisory board member on the autism spectrum, John Elder Robison, announced his resignation from the organization this month in protest of the organization comparing autistic people to kidnapping victims and claiming that our families are not living, but merely existing, due to the horror of having autistic people in their lives. In his resignation letter, he discusses his four years spent attempting to reform the organization from the inside without success, stating, “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
The disability community recently celebrated the 50th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, legislation first signed into law by President John F. Kennedy in 1963. The law begins with the statement that, “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”
We believe that statement to be true. Over the past fifty years, the disability world has focused on making these aspirations into reality, and significant strides have been made. Unfortunately, the actions of Autism Speaks attempt to undo fifty years of hard-won progress and take us further away from a world in which the goals articulated in the DD act are fully realized. We applaud you for your interest in supporting the autism and developmental disability, yet firmly believe that your support would have a more positive impact were it invested elsewhere. As a result, we the undersigned members of the disability community stand together in urging you to end your support of Autism Speaks and re-allocate your donations to a recipient who can better represent the needs and desires of autistic people and our families.
We would be glad to arrange a meeting to discuss these issues in more detail. Please direct your response to Ari Ne’eman of the Autistic Self Advocacy Network at 202.596.1056 or by e-mail at aneeman@autisticadvocacy.org.
Regards,
The Autistic Self Advocacy Network
The Association for Autistic Community
Autism Women’s Network
Association of Programs for Rural Independent Living
Autism National Committee
Asperger’s Association of New England
National Council on Independent Living
National Coalition on Mental Health Recovery
Little People of America
Self-Advocates Becoming Empowered (SABE)
Not Dead Yet
Ollibean
TASH
The Thinking Person’s Guide to Autism
Queerability
Michigan Disability Rights Coalition
PACLA
Down Syndrome Uprising
YOUTH POWER!
DREAM: Disability Rights, Education, Activism, and Mentoring
Taishoff Center for Inclusive Higher Education
I Am Norm
We Are Like Your Child
The Unpuzzled Project
Autism Rights Group Highland
Autism Acceptance Day
I am a single mother who happens to have a son that is autistic .He is 6 but was 3 when he was diagnosed . I plan on lighting it up blue for my son .I do it because I feel even though people have heard of autism they really don’t know what it is or the struggle . I also post on social media to spread awareness. Now I can respect your feelings about how you are against it, Just like I hope you can respect mine
I can definitely respect your opinion, and I do appreciate you sharing your experience on social media. I think we can both agree that while people may be aware, we need more understanding. <3
Believe me I agree
I totally agree with this article. I work in special education and I cringe during the Light It Up Blue assembly. I cringe for the students with whom I work and for my colleagues (who mostly feel the same way). Let’s just live and let live and give all children what they need and preach acceptance and fairness in meeting the needs of our children.
I am a fellow homeschool, work at home mama with special needs kids… I always knew there was something I didn’t like about Light it up Blue.. Now I see why. It reminds me of March of Dimes and the total lack of help they provide all while taking thousands of dollars from families who need the support.
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YES! It seems like every cause has a huge organization that is crazy popular but doesn’t really help. So frustrating!
I have been reading along and am not sure how I feel about Autism speaks v.s. other autism programs. I would prefer to see a Federal/ state run examination regarding Autism speaks.
I do want to make a few personal experience with MDA. I was going to the Mayo Clinic regarding a movement disorder. The MDA not only helped me find a place to stay for 5 weeks(for free and with supportive wonderful people. They also were willing to pay all of my $30,000 medical bills! I had insurance but they paid the rest of bill not covered. That is action!
I also know a family with 2 children with SMA Their children are part of the newest and most successful outcome tests for a new drug that may keep them alive!
I just had to comment because we must based our feelings on facts, not picking apart. Take what you need and leave the rest!
Light It up Blue had been a positive impact on our family and friends as a whole.
Autism awareness month and blue is add offensive as pink and beat cancer awareness just to name one.
So from one mother who firmly believes it saved one personal tragedy within our family,
Maybe this year you will see the blue and see it as a light of a life that is still with us.
Actually, a lot of breast cancer patients do get offended in October when the world turns pink but no one actually does anything. It is very similar.
I am very happy that it saved your family member, that is wonderful! I am so thankful that your personal tragedy was avoided. <3 I do, however, think that promoting autism acceptance versus only awareness and doing so without autism speaks' involvement could have achieved the same thing. Again, very happy that your family member was reached by this message before something terrible could have happened.
Praying for you and your family. <3
Different organizations take different approaches. Just because it doesn’t suit you or you have different opinions doesn’t make it wrong. Let us all approach Austism Awareness or Advocacy in whichever way we can to better the lives of our special needs children.
I think autism speaks does more than take a “different approach”. They want to end autism. They don’t help autistic people and their families. That’s more than a different approach, in my opinion, it is wrong and harmful to the autistic community as a whole. I do appreciate you taking the time to comment, we do all do what we can to advocate for our children.
I asked my 39 year old son, if we could go back and make it so you were not autistic, or could be “cured” of autism, would you?
He actually sat for almost a whole minute before he gave me an answer……it was NO, there’s nothing wrong with me! “There is something wrong with people who refuse to get to know me, but there is nothing wrong with me.”
He makes me proud that God chose me to have such a special gift in getting to be his mom!!!
Autism Speaks is sadly nothing more than a cash machine for people who do very little for the people who they claim to support. If you talk to many autistic people or their families, the majority will whole heartedly say they do NOT speak for us. Their philosophy is severely flawed, and their ‘support’ is little more than talk. This is not a matter of ‘doing things differently’, this is about using the disability of others to build a cushy job for themselves preying on the desperation of those they claim to speak for and on the goodness of those who want to donate to a seemingly good cause. People really need to be more diligent in researching what they support. Autism Speaks is NOT it!
This post is everything to me. Thank you <3
You are so welcome, Judy. I am so glad that you liked it. <3 Thank you for reading and commenting!
Wow, I had no idea about Autism Speaks until reading this. I cant believe that I have never looked researched what they are all about!!
It’s so scary that they hide this awful truth, isn’t it? Glad you found this post!
I agree with some of this, but education begins with awareness. Yes, everyone by now knows the word autism, but do they actually know what it means? I have a blue porch light that stays in all year round. When I am asked about it, I take the opportunity to share what autism is and how diverse the disorder can be. Getting angry about folks trying to expand awareness and education is an overreaction in my opinion. Most of us who live with asd on a daily basis take every opportunity to share education and awareness on a daily basis, and I am sure that you do too. I do not agree with every autism organization, and I don’t want my children “cured”, but I will take every opportunity to educate anyone who will listen, If they want to be “chic” and be blue on April 2, fine. Usually those that participate are open to learn and hear what having a family member on the spectrum, or what it is like to be someone on the spectrum. With awareness comes education and with education comes acceptance, less discrimination, and that will trickle down from the parents to the children.
I do not attach my blue light to autism speaks, I personally do not have anything to do with that particular organization, but I am all for education, understanding, and acceptance. If it begins with a blue light, than I will take it.
This is exactly right! People show their support for the awareness, but where is the support for the condition? Helping parents out, giving them a break, helping in supporting them?
Wow – really interesting information you shared about this organization. I had no idea (not having family with autism) so generally I would think its great to do the April 2nd light blue idea. However, its important to know why we’re doing that. Thanks for your feelings about it.
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I totally get where you are coming from and I am not one of those people who jumps on a bandwagon just because. I support several causes and show it accordingly.
I am so sorry that you feel this way.
As an early childhood provider this day is so important to me only because I want people to be made aware so they learn what Autism is and help break down the stigma that is attached to it.
((hugs)) I know that this road isn’t easy and I wish there was some way I could help.
I will be wearing blue this Saturday to support my niece, my students, past and present, with autism, and my amazing 17 year old son. With the support and understanding that our district and community have always shown, he has grown into quite an accomplished young man.. I do not give monetarily to autism speaks but I believe wearing blue and autism awareness campaigns create opportunities for conversations and educating others therefore creating understanding. I have felt the frustration your feeling. Usually for me it was encounteting other people’s ignorance. That’s when I realized I needed to be part of educating other about autism. I hope through prayer and your blog you find a productive outlet for sharing knowledge and understanding. Letting go of frustration and anger through prayer is like lifting a heavy weight. Best wishes and God bless from one mom to another.
Thank you for raising my awareness about Autism and Autism Speaks. While I have a very basic understanding of Autism I have to admit I should learn more. For example, I didn’t realize April was Autism awareness month, nor did I know about lighting it up blue. I think social media can be a powerful tool if used correctly and not simply a regimented action for the day’s philanthropic venture. If, for example, people posted facts about Autism, ideas about truly raising money, awareness, and acceptance, and directed people, like me, to the proper places to learn more – I think you could change the hearts and minds of lots many who are otherwise ignorant. Thank you for being on the front lines fighting to educate us about what’s truly needed and important to help support those with Autism.
Thank you for your kind words! The Autistic Self Advocacy Network is promoting Autism Acceptance Month, challenging people to take it a step further than awareness. I’m doing what I can to get that story out there!
Thanks for your wanting to help. Maybe call a local mental health office, ask if they can help you find an autism support group
You could start there. Then if you feel you could, offer to do respite care for the parents to go out, have a night or day out, just the two of them. That would be awesome!!!
I have heard bad things about Autism Speaks before. Goes to show you always research an organization before supporting!
While I agree with this somewhat with this, and I by no means support Autism Speaks financially, the one thing I do agree with is spreading awareness. The more people that know and understand Autism the better, in my opinion. My question has always been, why is it okay to wear pink in October for Breast Cancer awareness but not blue in April for Autism Awareness?? Just because I Light it up Blue doesn’t not mean I support one organization, it means, to me, that I support my son. Just like, in October, I wear pink to support my cousin, a Breast Cancer survivor. I wear Purple in June for Alzheimer’s Awareness in memory of my grandpa. For me, that’s all it is, raising awareness so that there’s more understanding. But, maybe it’s just me…
You definitely have a valid point, and we agree on many things. My issue is when it stops at awareness, which is what I feel Light It Up Blue does. I am absolutely for promoting understanding and acceptance beyond just awareness. Also, many people have this same issue with wearing pink in October.
I’m curious about why you think light it up blue does nothing but increase awareness. Awareness doesn’t just mean knowing the word autism. I think promoting awareness of autism means helping people understand what autism is. It’s opening up communication with people who don’t know anything about autism. Maybe seeing a blue Facebook picture will cause someone to research autism to get a better understanding. In order to promote acceptance and understanding, we have to educate people about autism. I think getting people to talk about autism can be a step towards acceptance and understanding and light it up blue does that.
What do you think? Am I way off in my thinking? I ask because I do not have a child who has autism. I’m a teacher and I teach children with autism. I teach acceptance all year, so it’s not any different in April. I just think the fact that someone puts out a blue light, wears blue, or makes a blue FB picture isn’t really an indication of how much that person does for promoting acceptance.
I really appreciate your post, I didn’t understand about light it blue meant. I know now and been against Autism Speaks four years but I wasn’t aware in how big this issue is with them. Sharing your post.
Thank you so much, Lorena. It’s scary once you look at just how much they have their hands in!
This is exactly why I don’t support breast cancer organizations, because it’s all about pink and not about actually helping anyone. I had no idea Autism Speaks was the same way. My nephew has autism. He is amazing and so smart, but I also see how he struggles, and how expensive all the therapies he needs are. It’s a shame that some states and organizations don’t lobby for better care or assistance. I’ll definitely be supporting organizations that do good and aren’t only about the money.
It is exactly like with breast cancer. The whole world turns pink, but actual patients don’t see much benefit. You are so correct that better services need funding. That’s why it kills me how many people donate to autism speaks and they don’t even help!
I have several friends whose children have autism & I can say it’s not always an easy road. I pray daily for those God has called to walk those shoes & be that child’s angel & helper. If only people were aware more than the month of April like you said. These children are amazing & to think someone would want to abort their baby because it’s autistic is crazy too me. I’ll love my child no matter what! Thanks for speaking from your heart & keep on pressing momma! You got this!
Thank you for your kind comment. Autism is definitely not always and easy road, but it can be beautiful!
Love this post for the most part – as an autistic woman, I despise A$/LIUB. However, the “social media activism doesn’t help anyone” part is actually rather ableist, although I’m sure that wasn’t your intention. For some of us, social media is the only way we are able to be involved in activism. For myself, things like social anxiety, executive dysfunction, limited energy, and communication difficulties often prevent me from participating in activism outside of the internet. Sometimes I can – but a lot of times I can’t. Offline activism isn’t always accessible to folks with disabilities, for a variety of reasons.
Oh Anna, thank you for calling me out on that. I am absolutely still learning. I wasn’t clear with my wording and I should have been. I definitely believe in the power of the internet. I use my blog and social media to get my voice heard as an ally. The “social media activism” I was referring to here is people who do nothing but what is currently popular on social media. For example, a few years ago it became the “thing” to support invisible children. Every October it’s the “thing” to make everything pink. I am so sorry about my comment, it was never my intention to be ableist. Thank you for kindly pointing it out to me. <3
Thanks for listening! Believe me, I’m still learning myself and make plenty of mistakes. :) I could tell that it wasn’t your intention to be ableist, which is really the only reason I felt confident enough to say something – I hate confrontation, but I know how much I appreciate it when someone gently calls me out when I’ve unintentionally said/done something problematic. I definitely agree with you about that type of social media “activism” – you’re right, just going along with the latest cause because it’s popular rather than because a person actually cares about it doesn’t really do any good, and can even be harmful by spreading misinformation and such. <3
I am the same way, so I am so appreciative that you let me know. :) And yes, it can be harmful! Like when Autism Speaks did there “I am Autism” video aimed at “awareness” that made autism out to be some scary monster out to steal children. Ugh. Thank you for commenting. <3
I respect and understand your views on autism speaks. I am a mother of a autistic child who lights it up blue in April and also all year. I post to encourage friends and family to not be discouraged, or embarrassed or helpless. I post because i once was all this plus more. I don’t believe in there being a cure but only solutions to help them become as independent as they can be. This world is cruel and not to accepting of any person with a disability. Im determined for my child to be more than a Wal-Mart greeter. I want a lot of the things you want out of this world, the reason I don’t donate to research or just any organization, I make my own jewelry and shirts to wear. I post on FB in hopes of one day starting a blog about children period. All children are different, learn different, play different, think different, disability or not!!! Stay strong and never hold back how you feel, I’ve helped a few young mothers accept that their child may have autism but i also encourage them to get proper testing and to not let the doctors just throw a diagnoses at them just because they so called fit the discrption. I tell them its a rough road but its able to be traveled, they have to learn their childs every move and thoughts and teach them in a way that they understand not the way other ppl children understand. Sorry for such a long post. I love your story.
Oh I am so thankful for your comment. <3 I completely agree that we need to be funding research into solutions for independence, rather than a cure. I love that you want to possibly start a blog. I'd love to help you with it, if you're interested! Shoot me an email, thisoutnumberedmama (at) gmail (dot) com! <3
Ok thanks!!!
Autism Speaks is neither all good nor all bad. Nobel goals, poor implementation. And believe me, as the parent of a once healthy child severely affected by the regressive form of autism, ending autism IS a noble goal –as is supporting families dealing with it.
I differ with Autism Speaks POV in that their party line is vaccines are safe and they refuses to see the many eyewitness parent accounts of regressive autism as vaccine injury. Although I was surprised to see the grandfather of a child with autism– who started the organization Autism Speaks with his wife–amazingly tell Matt Lauer, (paraphrased) “you have to wonder if all the one-size-fits all vaccine schedule is are good for all children, since all children are not alike.” And I’ve readthat his own daughter blames her son’s vaccines for his regression into autism. https://www.youtube.com/watch?v=Op9FdFTtO9U
But I just don’t believe parents who claim they don’t want a cure (as IF they had a choice!!.). Even if they say that now, just wait til that cute little boy who is progressing so well before the age of 5 with the help of ABA, speech, TLC etc, still wants to watch Barney at age 16 and /or has a major regression due to seizures. Wait til that little toddler is a teen who longs for a neurotypical girl at his school to “marry” him–misunderstanding her kindness and compassion for him.
It friggin’ breaks my heart. So, yeah, people are aware already. What they may not be aware of is that Temple Grandlin is an outlier. And Jerry Seinfeld does NOT have autism, no he doesn’t. Not even “mild” Aspergers. No. He. Does. Not. The vast majority of people with autism as I know it will never go on the lecture circuit or marry or independently support themselves or do a hundred other things people without autism take for granted. Like understand world history or what a war or a villian is, plots of Disney movies, or even why his mom is crying as she drives him to the pool for a swim on a Friday night instead of letting him have the car to go to his high school football game like other teens his age.
It is tragic what autism is robbing our beautiful children of. I love my son to death. I’ve learned so much as I’ve struggled to parent him and keep our family together and happy under the strain of his immense needs. I’d jump in front of a speeding bullet for him, but then WHO WILL TAKE CARE OF HIM WHEN I’M GONE? He can’t be left alone for ONE HOUR, much less his lifetime. Who will love him and play with him and watch over him if I drop dead of a heart attack tomorrow? This is why we need a social safety net. When I hear presidential candidates railing against big government, I just want to ask them: Will YOU take in all the adults with disabilities? Even if you think the 1 in 68 is exaggerated and all will not need a lifetime of care… What would you do for the ones that do, on your own? We don’t have ONE blood relative willing to commit to taking our son in if we die together unexpectedly in a car accident. That is a very, very sad truth. Maybe other extended families have relatives willing to make that commitment, but we don’t. Fortunately, my daughter is willing to, but what if something happens to her? What if her future husband does not feel the love for our son that she does?
All these “what ifs” are exactly why if we can’t prevent or cure autism we need a social safety net.
But what makes me crazy is while railing against big government , one of the few issues both GOP and Dems agree on is forcing an evergrowing number of vaccines on healthy babies–with the best of intentions, but with the unintended consequences of making MANY (not all!) of them feverish, sick, triggering seizures and night terrors and regression in speech and cognition–all in an attempt to avoid viruses like Measles, Mumps, Rubella, Chicken Pox, the flu (5childhood illnesses that I actually had and then was just fine…with a far more robust immune system than children have today. The CDC coverup that was exposed is just the tip of the iceberg. Look at the Vaccine Court cases… if that information was as widely publicized in a Vaccine Adverse Reaction Awareness Day, THAT might actually have an impact and stop the madness that is harming our infant and toddlers’ immune systems and developing brains. It . Is. An. Outrage.
And if I hear one more person call me and others who are concerned about vaccine safety, “anti science” or “anti-vax” I will scream. I trusted the doctors, I complied with the daycare requirements… now, everyday, I see the harm of my misplaced trust and the results of those assualts on his developing brain.. I should have been more selective and I should have waited until he was walking and talking and able to articulate how he was feeling…like the Gardisil victims.
Our children should not be guinea pigs, yet everytime they add a vaccine they are guinea pigs as shots have not been studied in the ever-growing combination they are now given. There has been no study of completely/”fully” vaccinated children with truly UNvaccinated children.
Ok that’s me, sharing my autism blues.
There’s my rant. Light it up blue. Or not. It changes nothing. Only changing the madness of the ever-growing CDC immunization schedule into something similar to the very few vaccines our generation had will stem the growing tide of autism, ADD, asthma, and allergies that have wrecked our children’s immune systems and brains.
I am an adult with autism. I attend a program for autistic adults in their late teens and early to mid twenties. I understand world history, in fact I used to rather enjoy reading about it when I was younger and had more free time. I certainly know what war is, and not only do I understand Disney movies, I have a favorite. It’s Mulan. You vastly underestimate what we are capable of doing, and I am not just talking about those of us who are referred to as being “high functioning”. Many “low functioning” people I’ve met can do those things as well. Of course not all of us can. But to put all of us into one category is ignorant and just plain insulting.
I feel very mixed about this article. I don’t support Autism Speaks, I chose to support another organization, but I do not think it is a bad thing to light it up blue and show solidarity for those going through this. I think it is possible to find the negative in everything, but looking at the positive reasons why people choose to Light It Up blue is a good way to go.
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Thank you for your comment. I see your point. I guess I see more “bandwagon” people lighting it up blue on Facebook versus people who actually support autistic people and their families. Maybe I’m just burned out. :)
I feel the same way you do.
My son is absolutely amazing, a special soul that makes an impression on everyone he comes in contact with. We are lucky because he’s a high functioning autistic kid that everyone remembers and loves.
I used to be embarrassed or sad when we first realized that he was different. But now we all look at it as such a blessing.
I can remember when he 1st starting talking at 4 he would take word and phrases from shows like star trek and star wars to talk. It was so unique and interesting. From then on I looked at his autism in a whole new light. It’s been hard but also eye opening. Now he’s excelling much more than any of us thought. And I could be prouder. Thanks for sharing your story and thoughts on a topic that so important to so many of us.
My son used tinkerbell movie phrases to talk at first. Isn’t it so interesting how their brains work?
This is a very well put article. I was kind of there with you already, as the ALS ice bucket challenge was sent to me last year and instead of doing something stupid with ice over my head I sent a check to ALS for further research to understand it. I think we are all guilty of not always thinking out the ug picture! Thanks for sharing.
Yes, I noticed the same thing with the ice bucket challenge. So many people who did it didn’t even know what organization they were “supporting”
I agree with your passion about not just lighting it up blue without any other form of support or action behind it. But I do think that most people who choose to do it are people whose lives have been touched by someone with Autism. Personnally I wouldn’t change my profile picture to represent a cause unless it mattered to me.
I have 3 children. Our middle daughter has Down syndrome and our youngest child is receiving early intervention services because of high scores on the MChat. I also spent 15 years in the classroom as a special education teacher, so I hope I don’t present myself as someone who doesn’t get it :-)
I really had no idea about the information you wrote about Autism Speaks, and I am absolutely going to read more into it as soon as possible.
I agree with you that “awareness” in he sense of hearing the word Autism more often these days means very little. In terms of awareness, I feel like there is so much more people need to understand about people on the Autism Spectrum. I know you have been that mom in the grocery store when your child is having a meltdown and seeing the looks you get from people who think your child’s behavior is outrageous or that look at you as if you have no idea what you are doing in the parent department. But there is always at least one other person in the crowd looking at you and thinking, “I get it. I know you are struggling right now, but it’s ok! You are a great mom who braves the store with your child knowing that things will never get better by keeping them away from situations that cause these behaviors. It will get better.”
This is awareness to me. Knowing to automatically look beyond the child’s behavior and understanding that there isn’t a stereotypical “look” of a child with Autism. Knowing what the word Autism is and truly understanding just how unbelievably broad the spectrum is are two completely different things.
So I guess I understand part of why you disagree with the “light it up” campaign, I think that if it sparked a conversation with even one person who thought they knew what Autim is because they saw Rain Man a few years back, it just might not be such a bad thing.
Sorry for the length of my comments and I hope you are not offended by any of them. I am that mom in the grocery store with at least one child screaming for one reason or another and I find myself desperately searching for someone who knows that it is the situation and not my child or my parenting that is the cause. After 10 years of marriage, 6 of them with at least one child with special needs, I still find myself having to explain things to my husband about sensory seeking behavior, rigid schedules, etc and I feel like everyone could use some more awareness (myself included). After all my time in the classroom and in my own home, I still find that I learn something new every day about Autism.
Oh mama thank you for your comment! I think we agree on many points! We both believe in moving past awareness of the word autism, and promoting acceptance and understanding. I also completely identify with the grocery store scenario! I even have a post called “I am THAT mom with the screaming kids in the grocery store“
You got me when you said that Light it up Blue funds go towards prenatal test to help diagnose in the womb to give parents the choice of discarding the baby. This…is so sad and disgusting. My psychologist told my mom that I showed signs of aspergers (which now falls into the Autistic Spectrum Disorder) and I’m positive my mom would have been appalled to have been told that she could opt out of having me. I believe every life is worth keeping, whether autistic, Down syndrome or other congenital conditions. I don’t believe that autism is a disease or anything negative. It’s simply something that makes a person different from others. It doesn’t make that person weird or lesser in any way shape or form. They just see the world differently and forcing them to conform to “normal” standards or…*shiver*…exterminating what is seen as “not normal” is not only wrong, but degrading to us as human beings who are one of the few species capable of true altruism. The selfish, aka, animalistic nature of weeding out what we deem unworthy or unsightly is deplorable. Thank you for this post.
Oh friend. I so agree. It absolutely breaks my heart that this is one of their big goals, and people are thrilled about it. It’s horrible. I’m so thankful for your comment!
“A huge portion of their budget goes towards research for a “cure” or a pre-natal test for autism so that women could choose to not have their autistic babies.”
I had NO IDEA that Autism Speaks devotes a huge amount of their resources towards ‘ending autism’. Horrible. Thanks for informing me.
I honestly had no idea all of that about Autism Speaks. I agree with you in that we don’t need more awareness, but we need more acceptance and understanding.
Thanks for your comment!
Have you heard of https://www.facebook.com/kulturecity ? Might be one of the organizations you are proud to hear about. Love your post.
I hadn’t heard of them, I’ll check it out!
I’ve been seeing a lot of comments about supporting Autism through the color blue on my social media feed. I think most people are coming from a good place and trying to be supportive.
True, they are trying to be supportive. I more meant that it would be so much better to take a step further and support autistic people and their families in real life.
It does help. It helps by starting conversations. It’s not just about hearing the word Autism more. People’s interest gets sparked and they do more research and they learn more. Then maybe they even donate. Social activism is a small part that, on it’s own, doesn’t do much. But it sparks so much more than just awareness. I think you might be being a little short sighted.
Interesting perspective from another parent. I think it can be very important for the purpose of awareness because if one person changes their views or learns something about autism and helps out a family then that’s a positive gain, I supported it with a challenge for people to educate themselves about Autism….with it being at times being a hidden disability….parents often face unwarranted scrutiny for being a “bad parent”. So many families I work with (I’ve worked with 300-400) wished people were knowledgeable about Autism. I do understand what you are saying….I think that if people are going to support a cause, they should do so with more than a colour.
I completely agree. We absolutely need more acceptance and understanding. I think my issue is when campaigns stop at simply being aware of the word autism.
This is a really interesting perspective! It seems like there is a new “cause” to support every day on social media. I love the awareness of different issues, but it seems like when there is a new thing every day to support, nothing really is supported, and it seems a bit fake to me. I love what you said here!
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That’s such a good point. Social media activism is big lately!
Yeah. Why don’t we spread awareness and actually do something about it? Not just activism..
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YES!
This is the first time I have come across your blog- and to be honest I only clicked because of the title. I also had not been aware of “light it up blue” until yesterday when I logged into Facebook. Am I ignorant? No. Have I been living under a rock? No. (I have a child with different needs and so have been consumed by that but through social media and blogging myself I have been drawn to new things and wanted to learn more. I have heard of Autism – know a bit about it but what I know is vague and I actually want to understand more. I hear and feel your passion but I feel like seeing the prompts on Facebook have drawn me to places like here, where I am learning more. That can only be a positive thing. x
Oh I’m so sorry. I did not mean to imply that everyone was aware of light it up blue, or that they were ignorant if they weren’t. I meant more that everyone was “aware” of the word autism, but we need to be sharing things that promote acceptance and understanding versus just awareness.
OMG I just read my comment and it sounds ultra angry – which I really wasn’t! I didn’t think you were calling people ignorant so sorry for my tone. I was trying (not effectively!) to just say I understand your views but I’m a little glad for the promotion as I wouldn’t have come across your fab blog and the others I have who are talking about Autism. Apologies – sleep deprivation and commenting probably not the greatest combo! x
Oh mama I didn’t think you were angry, I was just really hoping I didn’t offend anyone! :) <3 So glad that you found my little corner of the internet. :)
I am an the proud parent of a teenage boy with autism. I can see some of the points that you are making but I disagree with a lot of it. If even just one person sees a blue profile picture or anything else related to LIUB and it causes them to think for a moment isn’t that worth it? There are many people in my social media circle who have asked about autism and my child due to this. And any chance to educate people is a chance to strike down misinformation.
We lit it up blue. I’m a bit unaware of the bad things reviews in regards to autism speaks. But I will definitely look into it now. My kiddo is 5 and autistic. My neighbors and friends all wear blue in support. ? Kind of bummed to know I’m going to be so disappointed in the movement.
We kind of all do it for fun more than anything. No one cares, they all love Frankie for him and have all found their unique ways to communicate with him. I leave it to Frankie to spread awareness and acceptance. The blue is just used as a bonus. But I will definitely look into the hidden things behind this charity. We did raise money for them the first year my son was officially diagnosed. ?
I can certainly understand why you get annoyed and frustrated. I have to say I didn’t know that autism speaks was such a bad organization. :(
I’m so glad I found this post! You make a many good points here, things I had not even realized… or thought about, so thank you! I am doing a weekly round up post on my blog this week, and plan to share this article on it, as it offers a unique perspective! Very well written and very thought provoking!
Thank you so much for sharing the post! :) <3
Send me the link once it’s live so I can be sure to share it. :) thisoutnumberedmama (at) gmail (dot) com! :)
Your thoughts on this are like my thoughts on breast cancer awareness. We’re all aware of, and patting ourselves on the back because we wore pink or changed a profile picture doesn’t help anyone. Also, it’s like the March of Dimes wanting to end premature babies, primarily by aborting babies who may be born prematurely of with other physical or mental issues.
I totally agree about breast cancer awareness, but I had NO IDEA about the March of Dimes!!! I’ll have to look more into that! I’ve had two preemies!
Thank you. My daughter is autistic and I despise “light it up blue”. Blue to me is sadness. It also represents boys and as anyone knows, boys are not the only ones that are autistic. This year I told my friends to not “light it up blue” because it doesn’t represent my daughter. Instead I asked them to wear bright funky colors and tutus or tiaras, things that make my daughter happy. I also do not like “awareness”. Most people are aware of Autism, it is 2016 after all. Instead, I push acceptance and education. I was aware of Autism before she was diagnosed, but I wasn’t educated in what it really was. Also with regards to AS, not everyone is aware of their dangerous attitude towards autistic individuals. We need to get the word out more about how dangerous they are and how detrimental their “research” is. I much prefer to donate my time and money to a local organization that will actually help my daughter and our family, and others in our community. Again, thank you. And keep being the unpopular mama…we need more like you..
It saddens me to think that there is a political correctness in the way Autism Awareness and Autism Acceptance is spread. Like life isn’t hard enough with the struggles we face and the stares and the criticism and the judgment we see every day from those outside the community. I don’t understand but have come to accept when friends turns away or stop calling or when you are excluded from certain activities or when your church tells you not to bring your child back because because he doesn’t fit in the program and then calls you to see why you haven’t been attending or when your own family turns a blind eye or a deaf ear. So forgive me if I don’t understand your anger or frustration when we face the same impossible days or share in the same victories. It’s by the Grace of God I can live beyond the critical stares and the pointy fingers and the sleepless nights and the roller coaster I know my daughter faces on a daily basis. I will respect your wishes and not lite it up blue for your child but I will for my grandchild. And I am unapologetic for wearing blue or pink or red. Just know that if I ever see you in a store or in a restaurant or anywhere and you feel you have reached your breaking point I will be there to support you. I may be wearing a blue shirt or carrying a puzzle piece and you have every right to ask me to leave or you can ask me about my broken heart and how it has been filled with unspeakable joy.
Well, if you believe your child never having existed to be a good thing, then Autism $peaks will do a lot of ‘good things’ one day. Just sayin’.
I hear the same things over and over about Autism Speaks but I’ve never actually seen evidence of this other than someone saying it it blog posts. I’ve even looked for It! Where did you get your information from?
I too have an autistic son. He is four years old and diagnosed almost 18 months ago. Although I can understand your point, and to each their own, I really enjoy the advocacy for autism that month. I love that my family and friends celebrate my son and his amazing uniqueness, especially during this time. And although you say, people know autism on social media, they don’t…honestly WE still don’t, even as moms of autistic children. Every child is different, every situation is different, and they should all be acknowledged. May I also ask where you got your information for ‘Autism Speaks,’? I have done extensive research papers and used many of their articles, so I am unaware that the organization seeks to end Austim or advocate for abortions. As I mentioned before, I fully respect your decision as everyone has their own right to educate others, or celebrate their children the way they wish. <3
I didn’t read all the comments, but the one about breast cancer caught my eye. I feel this way in the whole month of October, when I’m reminded that I have had breast cancer (and it could return!) every year. Reminders of getting your mammograms could happen all year long, not just saturating the month. It’s not just about social media either, you cannot get away from it unless you go to a cabin and have no TV, (phone for emergencies), internet or anything. I have a nice little charm bracelet in pink and that’s all I wear that is pink.
While I can see where you are coming from with this article, I have to say that this isn’t always 100% true. I am lucky enough to live in a town where we wear blue and light it up blue, but we also go one step farther and host an Autism Information Fair at our mall where different organizations in the area come and set up tables with information. A lot of the information is on programs, services, and summer/day camps for special needs children in general. There are games for the children to play and activities for them to do and they can meet and interact with other children. It draws in a lot of people each year and you would be surprised how many of those people don’t currently have any relation to anyone on the spectrum. It started out small and has grown the last 6 years into a place where anyone can get information on programs and services for those on the spectrum. This helps expectant parents or future parents and family members to get the information they need or want. There are raffles and money goes towards the local organizations that run these programs for the kids. Even our school district gets involved and does something. As a mother of a daughter on the spectrum, we completely support Autism Awareness because we have seen first hand how many more people actually are more aware and more educated on the spectrum as a whole. I write a blog each year educating my readers on statistics and what it’s like to be an Autism momma. Of course, I reference these things all year in various posts, I do dedicate an entire post to it each year. So while there may be some bandwagon jumpers that do it just because everyone else is, I can honestly say that just because someone lights it up blue or shows Autism Awareness, doesn’t necessarily mean they aren’t out there actively educating and making a difference.
Here is my problem with your post. I am the mother of an autistic son. On Sunday I will wear blue, I will participate in Autism Awareness activities & “light it up blue” events. But not because Autism Speaks says to. Because I am aware EVERYDAY. Every single second. And just like religions have holidays, this is a holiday for my son – to me. I use this day and this day of national awareness to remind everyone I know that Autism is real and is a daily struggle, affecting REAL people. I don’t give a crap what Autism Speaks says, stands for or means. The name alone is ironic, as my son spent years being nonverbal. However, just like we celebrate Easter, I celebrate the journey that is “Autism.” And on April 2, every year, I celebrate my son and his amazing abilities..and all those just like him.
Wow. Had I not read your post I would’ve never known about Autism Speaks. I guess I never really looked into them because 1) I don’t have anyone personally affected by autism and 2) my mom friends with autistic children share their Facebook posts regularly. I’m sorry. I’m not big on social medía activism but I do have a heart for all differently abled children. I know first hand how difficult it is to get services that help these children thrive! I said in my blog, a while ago, that I didn’t appreciate how mental health problems and differently abled mental abilities are all piled up together into one big thing to get rid of; “While I would definitely pray for God to heal someone of anorexia or PTSD, I wouldn’t dream of asking God to heal someone of autism or ADHD, because they’re some of the most wonderful people I’ve ever met!” Your blog definitely gave me food for thought. I’m sharing.
Love! Shared it on my FB page: http://www.facebook.com/authorbrandiewiley
Acceptance and understanding starts with awareness. I have a son on the spectrum and I can tell you first hand, in the world I live in, there is not enough people aware. Being apart of the community you should know that every person with autism is different. My son who is seven happens to be excited about wearing blue tomorrow. I think having a day for other people to take an opportunity to learn about his disability makes him feel special and safe. I think that’s the point. Some people may not participate correctly but I truly believe it starts conversations and intrigue. Which in turn can only benefit people on the spectrum. More knowledge, more understanding. That being said, I realize that there may be some sensory processing difficulties tomorrow and we do need to be sensitive of that. My suggestion is to do what’s best for you and your family but not every one feels the same.
I believe all people hold value, it is not something that we get to pick and choose. And no, I don’t think you had to say what you said nicely. Good job Mama.
sad day at our place…especially when none of our 1000’s of friends and even Family does not even reach out.
Awareness just another reminder how ALONE WE FEEL.
Acceptance cant happen without awareness , anything that leads to acceptance has to be good, without past awareness campaigns it would be extremely difficult to have the general populace accept my son.
I guess negativity can be found in anything if one wants to put it there.
I know I have “Mijo Syndrome” (my attempt at coining a different term for Asperger’s Syndrome), but April was my birth month first and I feel like that was hijacked. Coincidentally.
My birthday is in April, too! So is my autistic son’s, coincidentally. Happiest of birthdays to you! <3
Tomorrow, on the 28th.
I liked the colour blue before I knew it was associated with autism, so there. I didn’t know they chose it because they still think blue is for boys (It was a girls’ colour first anyway). In that case, I still like the colour.
I am an autistic adult. Mother of autistic kids and this felt really negative to me. I’m happy that people are trying to make an effort the best they know how. I am tired of the acceptance v awareness battle. What’s wrong with both? we need people that are more aware, school officials, first responders etc. there are too many instances of things going wrong just for the lack of understanding. If someone wants to change their profile picture, or even dump ice water on their heads for causes they care about, go ahead. It’s very selfless to take a moment out of our busy lives to think about others, even for a second.
I will not support an organisation that tells my family, friends and colleagues that my life is difficult because of my children and that their lives are hopeless unless people donate money to save them.
Agreed!
Autism speaks can kiss my autistic ass :D
I agree with most of your article. I’ve been working with students with Autism for 17 years. We try to focus on awareness and acceptance everyday. But I do encourage people on April 2 to do something. Doesn’t have to be “light it up blue” but let’s use that day to get word if understanding out. If the general public only pays attention on one day, let’s use that one day. But I agree with you on Autism as. Keep going mamma
I think ur passionate about ur message.i have an autistic son and possibly autistic dghtr.my dghtr is a couple yrs older than my son and tho my son has had early diagnosis..my dghtr hasn’t.she had testing early on at 4 but didnt qualify for any services as my son did.i also have one more son who is my youngest.yes..3 kids..12,10,6…younger ones are boys and have special needs..my dghtr im finding out as she gets older..more and more concerns…already has a couple diagnosis from her therapy and ive requested further evals.u are right..i have read that its different in girls and so many just dont get diagnosed.i have mom guilt that my dghtr may have hidden herself and while im over loaded on all the services for my boys that i have missed her.im getting supports started up for her but my guilt is i should have recognized sooner.i never knew there was an autism day until last yr on social media.i painted my windows at home and put a blue ribbon by porch light..all in thinking finally a day to spread the awareness.finally a very personal cause for me and my kids.i live it x3 every single day.but…ur tone might have rubbed some wrong but i saw it as something very passionate for u to speak on.i love any input or insight from someone as urself.i give my kids their voice but they’re kids.what and how does it affect someone as an adult.all the schooling and therapy and routine and appts and programs..even meds..will my children be ok?will they be ok in this world when grown?its a fear i have but i know its not end all.to hear others speak on it from having autism themselves..its hopeful.its good.its perspective and coming from someone who is…ur thoughts..ur own voice..ur points..all matters.im always trying to get in my son’s head and there’s so much mystery sometimes.i really want to do right by all my kids and its hard if u dont have autism to be able to truly understand and get it but u never give up..even during a meltdown..even after being overloaded..even being shut down.i feel helpless at times but i dont give up.u don’t give up.i think by far ur the best person for ur babies becuz u can truly get it.so keep on blogging becuz moms like me who live it everyday need to know that things do work out for them when they spread their wings.and to inform others.all the points u made and other suggestions of how to support autism was great!a proactive way to shift attention from one particular organization to getting right close to home.esp special needs in church?gasp..that would be great!!helping a family one may know??hey,over here!i could use help! :) sometimes its ok to speak true to ur passion.thank u
Oh look, here come all the NTs telling Autistic people how to feel. Preaching how their way is best. Again. Shocker.
So I think acceptance is great verses awareness. I also think the fight over curing autism versus accepting it is a real one and contains real problems when discussing the spectrum.
Higher-functioning ASD adults push for acceptance based approaches. My daughter is high-functioning. We also have non-verbal violent ASD kids in our family. One will not ever live independently. Gene therapy, or “curing” that would be freeing and beneficial to those kids and their parent.
So I think this is not a cut and dry issue. I do completely appreciate your views on this. On another note I want to promote autism acceptance too because I struggle constantly with people believing my daughter has ASD not only with strangers, but my own family–because her struggles are uniquely the struggles of girls on the spectrum.
There are many non-speaking autistics who do not wish for a “cure” as well. Better therapies and more accessibility? 100%. But I still wouldn’t wish for a cure if myself or my child was non-speaking. (And we’ve dealt with aggression as well)
Thank you for sharing your thoughts!
If someone chooses to “light it up blue”, how does that negatively affect your life or your sons life? Does it actually have a negative impact on advocacy for autism? I can’t see one. Maybe it’s not super helpful, but it doesn’t hurt. It might inspire someone to learn more about it, or read an article posted by the person changing their profile picture. It might not. But it doesn’t stir hate or make people think autism isn’t something it isn’t. I work with special needs kids, almost all of which are autistic, and I’ve always always seen the community jump up to make autism awareness month fun and remind people that there are autistic people in the world. The kids have fun, the teens and those who can understand what we’re doing get to celebrate a part of who they are. I dont know anyone who specifically associates it with autism speaks, just with autism in general.
If someone is doing something annoying, but not harmful and definitely not directly related to you and your family, sometimes it’s just best to ignore, unfollow or block if you find it necessary, and continue being a great mom to your son.
The problem is that Autism affects people in different ways. I’ve supported Autistic individuals who are violent to their families on a daily basis, and I see the weary expressions on their Mum’s and Dad’s faces as they have to endure this. Are you seriously telling me that despite not being able to have a loving, communicative relationship with their children, such parents are happy and satisfied with the way their kids are? That’s just nonsense, and I bet the majority of people with severely Autistic kids wish they had not been born that way. It sounds like you’d be happy in a world where everyone was Autistic, and I think we can imagine how long that would last without the neurotypicals required to provide the huge amounts of support needed for cooking, cleaning, shopping etc. Autism is not a disease, but it is a condition that requires a lifetime of support and care that some parents would choose not to be stuck with if given a choice before the birth of an Autistic child.
So does a child have to be born with atisum?
My 20 year old daughter is autistic. She resents the “light it up blue” theme of Autism Speaks because she does not feel her autism is in need of a cure! It is who she is! It is how she thinks and how she relates to others. Yes, she has her issues but the issues usually stem from another person and their failure to understand. My daughter chooses to accept her autism as part of her, she doesn’t feel as if something is “wrong” with her that needs to be cured!
I support her fully! We will be out on April 2nd in support of Autism awareness, not looking for a “cure”! My daughter is special and she happens to be autistic! She is also an amazing artist and a wiz with a computer! I wish life was easier for her, but I would never change my child!
I am an Aunt of 2 autistic nephews and have to disagree…if it wasnt put onto to social media in the first place there would be less awareness and with awareness comes change and knowledge and it also is a celebration if sorts to say that i support my nephews and that i am on their side forever….everyone has an opinion
I only have one thing to say about this article. I was otherwise educated by everything else. Thank you. My one thing is what do we do about autism the rest of the year? Black history month is a thing. They are still, for lack of better words (and because its in the name), black the rest of the year. They’re struggle is just as hard every year. It has nothing to do with you being “special”, it is to dedicate and focus people’s attention so that they may better understand the struggles people face. In all actuality, it should be a year round thing but the sad reality is that nobody cares for that long. Even it is for just a month, someone somewhere went out of there way to find something out about autism. Don’t look at it in a bad way. I’m sorry I’m sounding like an ass but I have a cousin I grew up with and a little brother with autism and I didnt know about lighting it up blue. Hence, why I was educated. I went to an office that was giving out blue bulbs and had a label explaining why. I took one to support my family but forgot about it until now. I’m glad I looked it up. But with “your” month, maybe the nifty filters provided by social media may encourage some people to become more aware. Yeah, there are a lot of bandwagon people but some actually care. I’ll be sure to post this article on my social media. Thank you, lady! Have a wonderful day <3
A mother of a son who has atisum i thought the puzzle piece of all colors was the ribbon. What is this light up blue. Also for my self as a mother with a child of autism all i want is people to be aware and understand what kids and adluts with this goese through. all i would love is to have some one to help me understand the disabliaty. if anyone has information or even tips to share that will help out alot.
I light it up blue for my son and grandson. it has NOTHING to do with Autism Speaks but in my community it has brought awareness, neighbors ask questions and I appreciate that. What works for some may not work for others but I do appreciate the day. I understand where you are coming from but I just happen to disagree with the way you think which isn’t a bad thing by far.
If you Google Autism Speaks a lot of negative things from their early days pop up. That’s just about all you’ll find. They did an absolutely terrible job with their marketing back then. TERRIBLE. But as a person with an autistic child I ignored what I read online and chose to get involved in the local Autism Speaks organization and found tons of resources that help us as a family. But more than that, they have changed their mission. They are focusing on understanding and acceptance and solutions for our children and adults. They have a career network for adults on the spectrum. They have transition to adulthood resources. They have toolkits for all types of needs, from what to do after diagnosis, to sleep or eating tips and tools. The early marketing, PSAs and mission were bad, but please take another look. They have a huge lobbying effort in D.C. to make sure our kids get access to therapies (like ABA) and medical treatments. They are making every effort to support inclusion, understanding, acceptance and provide resources for the entire lifespan. The internet does not forget, but people and organizations can change.
Thank you! I feel the same way about lighting it up blue, social media activism and Autism Speaks. My 11-year-old is autistic (diagnosed at 2) and I had tried, up until about 2 or 3 years ago, to get people to see the truth about these 3 things. I stopped when I realized it’s a lot like politics. People believe what they believe, and even if you give a good argument and even show convincing evidence, people are still going to hold tight to their beliefs. Now I just do my best to love the heck out of my kid, teach his older siblings to be kind and decent to everyone and yeah, I’ve had a few incidents where I’ve had to explain to my 11-year-old that while most people are good, there are some who are just a-holes. I’m also teaching him to advocate and stand up for himself.
I did feel what others have said is the negative tone to this post, but I get it. I understand because I know that frustrated with everyone and everything feeling. I think you’re an amazing autistic mama and I plan on subscribing to your blog ❤️
Apparently Donald Trump this year has decided to light up the White House blue for autism. Clearly he doesn’t know what blue is associated with.
I think the best show of support for autism awareness is to use the multi-coloured jigsaw pieces rather than any specific colours. As that shows were all a unique puzzle and each one of us has our own unique abilities and disabilities.
I have Asperger’s and I also have many friends with Asperger’s too and we’re all different (like a jigsaw puzzle piece – every piece is different) – I have a friend who knows all about trains (he’s even built a few), I have siderodromaphobia (fear of trains), I have another friend who’s a pilot, I don’t do heights and I get claustrophobic and so I can’t even imagine myself getting on a plane. My main expertise is computers and I know a few people who are autistic who won’t go anywhere near a computer – everyone on the autistic spectrum has their own special abilities and disabilities.
My heart goes out to each and every parent that faces this everyday.I wanted to reach out and express how when I read your post I to teared up and understand the frustration. Your opinion matters to me and others in the field and I agree but, yet I wanted to share a thought with you. I like that you express your emotions and that is not only helpful for you, but for others who just cant put it into words. I however wanted to share my side of the story. I am a clinician another words I work in the career field as a behavior specialist consultant (BSC) and mobile therapist (MT) and I was however, asked to wear blue at work that day. I feel bad that you would put others down like myself that want to share the point that we are there to help. I did wear blue; because I work with children and families in their home, school, and community setting and I do make a difference in their lives as well as the community. I may not have a child with autism but I work with families who do and you are correct in saying that wearing a color is not helpful, but think of it this way wearing a color because I know I am helping does matter to me. I dare someone to ask me why I wear blue because the will get a heart felt answer… and some silly,sweet, great, negative, fun, amazing, wonderful,positive progress, sad, helpful and so much more stories of hope and information. When asked I can and do share the story of how our program ( the agency I work for helps) So I am no disagreeing with you and support you full heatedly but want you to think of why some other may choice to wear a color. Maybe you should look to those wearing blue for support.
I have a 5 year old son that is diagnosed with Autism since he was a little over a year. This was all new to me and I think awareness and having these organization like Autism Speaks is very important . I got a lot of information from Autism Speaks when I was first thrust into this, so I am a supporter. But, everyone has a right to their opinion so for the person who posted about “Not been a support of Autism Speaks”, please don’t be hard on them. I do wish them best of luck with their son because it is a constant struggle taking care of a child with Autism. I hope you have the support you need and will continue to need. My heart and prayers goes out to you and everyone who is dealing with someone with this diagnosis. Having he support could means the world of difference.
My exposure to autism has been on the periphery. Not having a child or member of the family dealing with autism it was not something at the cognizance of my day to day existence. So I have no background or experience to support anything I might opine here on the, “light it up blue” movement. However, earlier today I noticed that my neighbor had died her hair a bright royal blue and mentioned it to my wife. She noted that another neighbor behind us had added a similar blue to her hair. Since we were aware that both had autistic children, my wife wondered if it had anything to do with that fact. A little web wandering and I discovered the April 2nd date, as well as the month of April regarding autistic awareness, and ended up here. After reading this chain I can see both sides. As vehemently as I am opposed to bandwagon social media, I have to admit that the actions of my two neighbors prompted me to become more aware and to learn more about the challenges and facts behind autism. And maybe more importantly, what I might be able to do to assist. So while I agree that making things blue, in and of itself, really doesn’t effect change, it can effect awareness…and in an uninformed opinion, it would seem like raising awareness is the first step in effecting change…I applaud the feelings on both sides of the equation and can only hope these types of dialog bring the needs to the forefront of the populous and plant the seeds for possible solutions.
Thank you. I am 25 and was diagnosed with ASD at 17. It’s so hard to find ACTUALLY supportive groups around, and I knew from research to avoid the “blue” autism awareness sites. Since I was also a victim of Emotional and mild Physical abuse from a narcissistic birthdad (adopted my his mother and stepdad), I was scared to look into anything else until now, and…you’ve been really encouraging. Thank you.
When are non-disabled people going to start listening to disabled adults about what’s actually best for disabled kids.
Dear moms of Disabled children, your child is not broken, your child is NOT an inspiration, your child needs your advocacy not your erasure.
So sick of this and the comments from moms and special educatiors in this feed. Y’all need to sit down, stop talking and listen.
Nuro diversity is bulls**it, even many autistic people agree. Autism is a mental disorder along with many other disorders like Schizophrenia, deppression anxiety etc…
Dont know what the big deal in accepting this simple fact is?
You dont want a cure for autism tell that to the elderly lady forced to find a care home for her son because she cant run after her 14 stone 30 year old toddler anymore. Or the non verbal boy who headbuts the wall while his peers are in in the park having fun
Many on the left support the right of a man to have a sex change to become a woman. But cure a severly disabled kid with a life expectancy of 36 /56 depending if low or high functioning they throw their arms in the air in horror.
The world has truly gone mad.
Oh my God what a pretentious article. First of all Blue does not equals boy it’s for calmness. Talk about pushing gender norms. I think the more awareness the better. The services in my country is crap so a bit of awareness helps. Get over yourself
This will be my first April as an Autism dad and the first April when I have had any awareness of my autistic character.
Frankly I’m not understanding what anything that brings awareness can be considered as a bad thing! If I want to have a blue porchlight in my support for autism, I can…. and will! People on social media need to quit being so damn sensitive. Cry about this, that, or something new every damn day! It’s a freaking light bulb! I go above and beyond promoting awareness for autism all the time, and this is just one more way I can do that. So screw this PRO BLUE LIGHT! And quit your crying!
First of all as a parent with a child with autism, I don’t like the way the offer refers to herself and her child as disorder first person second. I’ve always described myself and my child as a person with autism and a child with autism. I feel like when you call someone an autistic person or an autistic child you are putting their disorder before who they are as a person. I feel like in the community this is something that is frowned upon. Second of all I don’t think anybody is disputing that Autism Speaks is a horrible organization. However lighting It Up Blue is a way to start the conversation and bring more awareness to autism. Adults have such a love-hate understand don’t understand relationship with autism. As a 36 year old man I struggled my whole life with a neurological difference. I was diagnosed at a very young age with the neurological Divergence. This was the best someone like me could hope for in 1980s in America. I struggled my whole life with trying to figure out what was different with my brain. I went to school. I learned from mentors. I read books. I eventually saw a therapist when I was about 32 and we came to the conclusion but I’m on the Spectrum. My son was born on the Spectrum. Since he was 6 years old and he received his diagnosis age we have learned more about autism. I think that articles like this are harmful to the autism Community because they don’t promote Unity and compassion. People should be able to light it up blue if they want because they believe in Autism Awareness not because they believed in an organization like Autism Speaks or that turning your profile picture to a blue square is going to actually do something to change a person with autism is life. I personally support Light It Up Blue specifically so that way it gives me an opportunity to have this conversation with people who clearly don’t understand what autism is and what it means to the world around us. Autism and neural Divergence have existed since the beginning of human existence it is only recently in our history that we have begun to unravel the complexities of the human mind and this is just one small sliver. I can’t wait to see what we uncover in the next hundred years.
I agree with the author . Autism Speaks is useless organization doing nothing for our children. They sound good , fundraising bunch off money but doing nothing practical for our children, especially in small cities and towns. The most information was given to me by teachers, therapists and local volunteers organizing sport events and other activities for our special children. My son is 9 now and every time we would apply for the program sponsored by Autism Speaks we are denied or not qualified. We are both working parents and our family’s combined income is too much for their programs. We pay for therapy, food clinic, behavioral therapy and social skills ( with Applied Behavioral Services) via our Private insurance or just paying cash. Yes , we do make cash arrangements because my son needs help now and we just got fed up with insurance and various organizations telling me what my son is “allegeable” for. My child get punished because his parents did everything right, got education and work hard. Autism speaks organization exists in a parallel world from us, we hear from them ones a year on the “ blue” day. Please do not give them money. Just invite your neighbor’s autistic child to you kid’s next Birthday Party and be patient with a kid having a bad episode in a store, we ( the parents and the kids) need your understanding.
I am a TA in a primary school, we are privelaged to have excellent Special Teaching Facilities with 4 classes situated within mainstream. We have chosen rainbow colours to support Autism Awareness day and believe in inclusion and irradicate bullying, discriminatory behaviour and stereotyping. We are all different and should embrace it with peace, love and understanding. I have not been diagnosed with autism but nor will I not seek one, Iam weird but I’ve learned to become accustomed to my ways, the people who love me will understand. Also, Ireally struggle with bright colours, I hate them, I like Black, but I’ll give it a go lol.🌈😊
You had one legitimate reason (the organizations mission) and the others were just to fill out the other 4 and were your own attempt to shame the huge number of people that celebrate their children’s individuality because of autism. I appreciate the facts, but don’t tell me to not celebrate one night a year because I don’t the other 364. You are saying that pink for breast cancer is stupid and meaningless because it’s just a color or just. a “fun run”. If you had been diagnosed earlier, you would understand what your view takes away from kids with hope.
Oh, and I don’t care what “Autism Speaks” does. Never have. I don’t give them money or even associate them with autism. I light it up because I love my son and god knows people like him deserve to be acknowledged.
I actually don’t think that people shouldn’t celebrate, I think they shouldn’t celebrate with a hateful campaign. I have an entire post about ways to celebrate Autism Acceptance Day without supporting Light It Up Blue >> https://autisticmama.com/instead-of-light-it-up-blue-autism-acceptance-day/
I’ve read a few of your posts now, and as I do hear some of your points, I don’t agree on this one. I do not see how lighting it up blue is not supporting acceptance. I think acceptance and awareness go hand in hand. Awareness of autism is one thing but we are spreading awareness of what autism is. That is what builds acceptance! I think it is absolutely absurd that people get in a tiff about it’s not a disability it’s who I am, and I don’t need you to be aware of me I need you to accept me. If people don’t understand what it means to be autistic then how can they become accepting and how can the community change to be more inclusive? Yes autism is a gift but it also comes with many struggles and that’s fact. People that have it should be proud of how hard they have to work because it shows they are stronger then most! That’s something to be praised and admired. As a mother of an autistic son and someone who suffers from a Nero difference myself, I know I’ve worked harder then many to get little and so has my son. I am proud to proclaim during the month of April, but I also take the time to share my story so that those around me can learn more about autism and raise their children to know more and hopefully someday their children will help create a world that is more accepting and has more awareness. We can celebrate how amazing autism is and also be honest about the struggles that come with it. That doesn’t mean we are putting people down or discriminating, it means we appreciate how amazing they are!
I agree 100 with your article organization just want to make money off your situation then really helping Austim families. Having a Austim child who is now 16 I have learn over the years that a lot of professionals people that say they are expects with Autism, school teachers, and regular everyday people don’t understand Austim especially high functioning Autism like my son. Parent always get blame for slot of wrong things because your child struggle with different things people can’t understand. They are not enough resources to help families these agencies just lie and make it seem like they are making a different but they are not. They you for writing this article
Hi there! I’m a young female adult (20) , I was recently diagnosed with autism. I’ve been learning a lot of things about it and myself, which i think has a lot of perspective on how the world views us and how the world treats each other. I grew up undiagnosed, so I was treated as normal as you can imagine a mexican kid in the US to grow up. I hate that Autism Speaks has coined autism to be a disability, an illness of sorts that needs to be cured. To hell with Autism Speaks; all the way up and down. In my experience though; colors have a lot to do with our sensory issues, whether its the eyes, ears, or fingers. I think lighting up blue can be a good thing. We’d been lighting up blue for my brother for years (before i was diagnosed) and blue was always a color that calmed me; made me genuinely happy and I never knew why until after diagnosis! There’s meaning to me with the blue, because it was an autistic man that chose blue (because it was calming to him too.) I think the key to awareness is that by RAISING awareness, people will actually WANT to understand. My small community lights up blue, and they do it with the intent of awareness, which is really beautiful to me. I think we should ask neurotypicals and autistic folk what the color makes them feel or think; that’s where we really connect. Neurotypicals will have different answers than ours, but we’ll understand WHY it’s blue to them. It’s interesting :) The fun part is that they’ll have to understand why we think “purple is blue”. Does that make sense? :) We should be raising awareness against autism speaks as a collective. ANARCHY! The blue has meaning; Autism Speaks shouldn’t be the ones tarnishing that for us. People post about them? People light up FOR them? LETTEM KNOW THAT THEY’RE NOT FOR US! Keep on rocking on :)