(Inside: Yes I Will Say That My Son is Autistic, and Other Unpopular Autism Opinions from an Autistic Mom of an Autistic Child. Understand the importance of identity language, why being an autism mom doesn’t make me a super hero, what therapies to avoid and more!)
My son A-Man is autistic.
Notice, I didn’t say that he “has autism” or that he “is a boy who happens to have autism” or even, as some people who are adamant about person-first language would say, “is a boy who likes goldfish crackers, Paw Patrol, playing catch, and happens to have autism”.
He is autistic.
Simply saying that my son is autistic can make me pretty unpopular with a lot of autism mama’s.
In fact, I’ve recently learned that a lot of my beliefs and views on autism are radically different than the typical view that autism parents have.
When we first received A-Man’s official diagnosis, I started researching like crazy and talking to as many autistic self-advocates as I could.
I wanted to know how they felt. What helped them growing up, what they wish their parents hadn’t done, what they wish they had done.
To me, that just makes sense.
If a man wants to help a woman, he would ask that woman what she liked/disliked/needed/didn’t need.
He wouldn’t go ask another man that happened to know a woman at one point.
Of course, that man may have some decent tips, just like some parents of autistic kids have decent tips.
But if they are not autistic, they cannot accurately explain how someone who’s autistic feels or thinks.
After all of my research and chats with actual autistic people, I’ve learned a few things that you could be doing that unintentionally hurt your child.
Today I’m sharing about why I say he’s autistic, and other things that make me an unpopular autism mama.
*Update, I have since learned that I am autistic as well… Check out my story here.
Yes I Will Say That My Son is Autistic, and Other Unpopular Autism Opinions
Identity Language is Widely Preferred by the Autistic Community
I’ve written an entire post about why we choose to use identity language when referring to our children, and you can read that here, but for now I’ll give a quick overview.
The whole point of demanding that people use person-first language is to separate the person from the disability and to remind people that disabled people are real people. (Holy cow, how many times can I put people in a sentence!?)
On the first point, I don’t see a need to separate my child from his disability.
It’s a part of what makes him who he is. I say that he’s autistic just like I say that he’s a boy. I wouldn’t say that he happens to have male-ness. That’s obnoxious.
On the second point, if you need to check your language to be reminded that anyone is a person, you have bigger issues.
Also, working so hard to separate the person from their disability promotes the stigma that disabilities are bad things that “happen” to a person rather than a part of what makes them who they are.
We Are Selective About Therapies
*Note: I wrote a whole post about autism therapies here if you’d like information!
A-Man receives speech therapy to help his expressive language delay to help him to more effectively communicate.
He receives occupational therapy to help him learn coping mechanisms and to regulate his sensory needs.
He will soon start receiving physical therapy to help him with his motor skills affected by his dyspraxia.
He is not, however, receiving ABA therapy.
ABA has been seen by many parents as the holy grail of autism therapies, but I really don’t see it that way.
If you’re unfamiliar, ABA is a therapy designed to change the behaviors exhibited by autistic children in order for them to be able to fit into society more easily.
Essentially, the goal is to help your child learn how to pretend to be neurotypical.
(Quick side note, anyone who was offended that I don’t use person-first language probably didn’t have an issue that I didn’t say that the goal is to help your child learn how to pretend to happen to have neurotypicalism. See? Person-first gets obnoxious.)
Some forms of ABA use abusive techniques designed to silence autistic people and force them to comply.
While there is a time and a place for ABA, and you can find therapists that practice in respectful ways, it isn’t something that’s right for our family at this time.
If we do try ABA in the future, it will be highly regulated, and used for very specific tasks only.
And if one therapist ever tries to tell my child he can’t stim, they’ll have another thing coming!
I’m Not Sad That He’s Autistic
I mentioned before in my letter to a mom who just received her child’s first autism diagnosis that it is okay to feel however you feel, and it is.
Most moms will agree with that, unless you aren’t sad.
I embrace my son’s autism.
It is a part of what makes him special, just like Mr. C’s giftedness makes him special, and Cap’n M’s global developmental delay makes him special.
Autistic people add another color to our beautiful rainbow of a world, and I would never want to see a world without it.
A-Man lights up my life each and every day, so I am not sad that he is autistic.
I am sad that the world may forever treat him differently.
I am sad at the lack of education, acceptance, and love for the autistic community.
My son and his autism aren’t what’s wrong, society is.
I Don’t Think I’m a Super Hero
There is a common belief out there that all special needs moms are super heroes. That our kids are so incredibly lucky to have families that care for them.
Honestly, I think this is a bit ridiculous. When people imply that I’m a “Super Mom” because I simply love my children with disabilities the same that I love my children without, it’s a bit insulting.
It implies that it’s difficult to love an autistic child, which I assure you, it is not.
I have loved A-Man and Cap’n M since the moment they were born, just like with Mr. C and Miss S.
I love A-Man when he struggles with eye contact.
I loved Cap’n M when he refused to eat solid foods.
I love Mr. C when he’s throwing a tantrum.
I love Miss S when she’s crying while I’m trying to write a blog post (guess what’s happening right now?).
A-Man is no luckier to have me than Miss S is. Baby M is no luckier than Mr. C.
I love, fight for, and do everything I can for each of my kids.
That makes me a mom. Some may even argue that makes me a good mom.
But simply treating my special needs kids the same that I treat my kids without disabilities doesn’t make me a Super Mom.
I Don’t Think You’re a Super Hero (or that cheerleader or that celebrity)
There are a lot of news stories about autistic people or people with other special needs that drive me absolutely insane.
“Cheerleader Takes Autistic Boy to Prom” should not be news.
“Cashier is Nice to Girl With Down Syndrome” should not be news.
“Girl in Wheelchair Made Homecoming Queen” should not be news.
Don’t get me wrong, these stories can be very heartwarming, and I read and share plenty of them for that mama who needs a pick me up on a rough day, but let’s take a step back and ask why it’s news.
If you took the disability out of those headlines, would it still be news? Absolutely not, because it isn’t shocking when someone goes to prom, becomes homecoming queen, or is nice.
It is apparently, however, shocking when people do these completely normal things for people with disabilities.
Someone inviting an autistic child to a birthday party shouldn’t be newsworthy, it should be commonplace human decency.
I don’t think you’re a hero for simply treating autistic and disabled people like you treat every other person in the world.
It doesn’t make you special, it makes you a decent human being.
I Don’t Want Your “Special Needs Prom”
This goes along with my last point, but I really, really do not want my children singled out for events like this.
There is a “special needs prom” being held in my area next month, and I really don’t understand.
People are trying so hard to “give special needs kids a night to feel beautiful and shine”.
Why can’t they do this at their high school prom, like everyone else?
Maybe, rather than making a cutesy prom just for disabled kids (which will likely make the parents/volunteers feel like they’re doing something good rather than actually doing the kids much good) we could simply make their actual prom more inclusive?
I’ll admit, sometimes having the option of an event designed for autistic kids is helpful.
A movie theater in my area puts on sensory-friendly shows which really helps kids who can’t tolerate the typical loud noises at a theater. It is simply an option there if that showing will fit their needs better.
The prom just keeps kids separated. There’s still loud music and bright lights, so it isn’t making it more accessible to autistic kids (or kids with other sensory issues) so I don’t see any point other than to say they did something nice for the special needs community.
My intention with this is truly not to offend anyone, I’m simply sharing my thoughts. I am certainly not popular with typical autism mama’s, but I’d much rather offend them than my own autistic son.
My advice? When in doubt, ask someone who actually has your child’s disability.
Don’t blindly trust the experts. One thing an autistic person told me that put it all into perspective is this: “Those experts screaming for person-first language are the same people who used ‘mental retardation’ as a diagnosis”.
The disability community is constantly changing and evolving, and as parents, we’re just along for the ride.
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Thank you so much for this article! I agree with you whole heartily. I find it amazing that is okay to say a child is musical, athletic, intelligent, but not autistic. The difference only being that the former are considered positive and the latter negative in meaning.
I also agree with you on the ABA. There is a time a place for it, but having seen first hand in the school systems how it is used, I believe it can be very damaging to a child. It is one thing to help any child to interact with hers/his world, but to demand him/her to be “just like everybody else” when she/he it not is cruel because no one is just like anybody else. We are all unique and should treat other with respect.
Oh I’m so glad that this post resonated so well with you. It is so sad that we try so hard to separate children from diagnoses because they’re perceived as negative.
Also, yes, ABA has a time and a place, but it can be very damaging. I think it should be used sparingly, not be the go-to therapy for autistic children like it is right now. Each child is unique, so I think it’s awful to try and change behaviors to make autistic children fit in.
Thank you for stopping by and sharing your thoughts!
Hi I like your article and your energy! I never knew about autism until I met my boyfriend. In our day there was nothing called autism. My boyfriend (age 54) has had a very hard life. He can’t hold a job (but has still managed to become financially stable through investing), his friends have all abandoned him and he is better alone. I am the only person he can totally relax around and that is because I don’t try to change him. He has meltdowns if anything is not exactly as planned. He goes bezerk if I forget to get a gas receipt. I think parents of young autistic kids try too hard to get kids to be NT and it won’t work. I say if they want to be alone, allow it. Try to get them ONE friend. Not more because that is too much to handle. They will grow up and be autistic still. They will still have meltdowns over the most mundane things. It doesn’t change. What changes is that they learn to mask their autism because others see it as strange. They usually are not good at masking it however and end up alone. But they are smart and extremely, almost insanely, disciplined. They will make it in life.
I love this article and totally agree on most everything! I say my son is autistic, I listen to adult autistic people for guidance and I WILL NOT but my sweet boy in ABA. I don’t want my son’s autism cured and I could care less how he became autistic. However, I’m conflicted on your last point about the special needs prom. I run a special needs ministry for kids at my church. I understand not wanting kids singled out. But I want to provide a place for kids to relax, be themselves, and know that God loves them just the way they are. I feel like my son works really hard all week at school to hold it together. I want church to be a place of respite. However, our program’s goal is equip kids to return to the mainstream by middle school. I don’t want them separate forever. It’s such a hard thing, balancing everything – giving kids what they need without pulling them out of the world.
Thanks for your post!
Oh Aimee you’ve given me some great things to think about! I am actually definitely *for* special needs ministries in church. We recently left a church because they had no options available for my son and he was simply left to eat snacks the entire service. I do see that there’s a time and a place for children to be separate when it helps to meet their needs. I think that’s where I see the difference between the prom and the church services. You are meeting the needs of children, whereas the prom is something that they have readily available to them already. The special needs prom being held isn’t sensory friendly or any different than the typical proms, so it isn’t meeting any needs other than being only for special needs children. Thank you for what you do in your church for our kids. It is so rare to find churches that are willing to love on autistic kids or kids with other disabilities, so thank you and I’m praying for blessings for you and your church in the New Year!
There is a big difference betweeen say a special needs school having a prom for their students and a regular school or community having a prom for people with special needs. One is doing what every other school does and the other is singling out people who are different.
This is true…the Night to Shine Prom is for ALL ages of Special Needs, not just high school juniors and seniors. So it is not singling out high school kids who “can’t” go to their own prom. It’s also a way to educate the community on how to interact with special needs people, and give people the opportunity to experience the joy the special needs community brings to the world.
It would be great if the special needs events were inclusive to all who agreed to the terms that make it more accessible to those with the special needs. It would be a wonderful opportunity for all involved.
I tried to comment on your post on The Mighty, but couldn’t log in, so here it is: Loved it! It’s so nice to read another mother’s perspective that agrees with mine. I write and speak on autism, but I’m probably quite unpopular with other autism moms. I don’t agree with ABA and I call my son “autistic” and I’m NOT sad my son is autistic, so I often feel like a lone wolf. I’m so glad others are spreading the love.
Tracy I’m so glad that you stopped by to comment! I was so nervous to post this, and the response has been overwhelmingly positive. It does feel lonely! Maybe more of us unpopular autism mamas should speak out!
Wow a great thing I found this post . Finding words for what I feel feels so refreshing. I am in India and at a place where awareness itself is a big thing still. We are a long way to go . But I naturally felt certain things when searching for help around to help my autistic kid .
I did not understand why I am irritated at idea of making him normal
As I can’t think of my kid in any other way. I was only searching for help , to let him be independent and learn life skills at his own pace.
Now I understood some of my ideas and feelings as I felt so at home reading your post and then comments.
This is great! I wish more parents were like this! Too many parents try to change their autistic kids into more “normal” versions instead of just accepting them for who they are. People need to also realize that ABA can be quite abusive and should only be used sparingly if at all.
Patents of autistic children should spend more time asking autistic adults for advice like you said. I don’t see why more don’t do that. Seems obvious to me too. NT people, no matter their experience level are still on the outside looking in. They just don’t “get it’ the way an autistic person does.
Thank you for this!
I am so glad that you liked the post. I agree, I will never truly understand what it is like to be autistic, so I ask someone who is autistic! It seems logical to me. :)
This is the post that I’ve been trying to write – beautifully put: your writing has a lovely energy to it – thanks for making me smile as I reflect on the year gone past and resolve to be a better autism mumma (like you, not all those others haha!!) and (more selfishly) a better blogger in 2016 xxxxx
Oh I am so glad that you enjoyed the post. Thank you so much for your sweet words. Writing is my true passion, so I’m glad that showed through! <3
Wow~
I have enjoyed reading all of this including the responses to your thoughts and beliefs. Many of your words are my thought exactly, but just did not know how to put into words. I believe that we are all made in the image of God and that our children were brought to us on purpose and with purpose. I was made for my daughter and visa versa. God does not make mistakes. My daughter was answer to prayer in my life, even though at the time I did not realize it. She has changed my heart, soul and my entire being and future for good. God has blessed me with this site I stumbled upon on facebook. So blessed to be here.
Thanks, rs
Oh I am so glad that you found the post, and the blog by extension, Robin. We are all made in the image of God, and we do all have a purpose. I am blessed to have you here as a reader. Have you read my Bible Verses for Special Needs Moms post? I think it is one that you would enjoy. Happy to have you here reading!
From an autistic adult; thank you! God made me exactly how I am and I would not change it for the world. Mum’s like you are awesome!
Kaylene I swear we are twins! (Well figuratively speaking) I have 3 diagnosed autistic children my 2 oldest are nonverbal.
I have uttered these same words and finally I found someone(you) who gets it. Here’s a virtual high-five.
We must talk more ?
Virtual high five returned, girl! I am so glad you found this post and we were able to connect! I saw that you subscribed to the newsletter, have you found me on social media? We totally need to talk more!! :)
I don’t have much experience with parents of autistic kids, but I never realized it was taboo to refer to them that way.
The “politically correct” way is to say “a boy who has autism”
i second that! Virtual high five to you too, well done for speaking out and fighting for what you believe in even in the face of opposition.
Thank you Ana!
My niece is autistic and she is the absolute light of my life. When she gave me a kiss the last time the visited I about fell out of my chair in happiness. I adore here and I work hard to be in her world.
Such a sweet story!
Well done, continue to stand up to what you believe in,. Your always going to run into someone trying to tell you otherwise.
Thanks Nicole!
Your son is lucky to have you for an advocate. I think it’s wonderful that you are doing what’s right for your family even though it might not be popular.
Thank you, Yanique!
good for you and standing up fr your son. One of my dear friends has a son that is autistic and she had the same attitude – he did & went just like everyone else and just graduated high school this past year & never had any issues that Im aware of with it all.
Love it, Laura!
Such an honest and heartfelt post. Thank you so much for sharing. I completely agree with everything you’ve said, good on you for taking a stand and standing up for your beliefs against opposition.
Thank you, Jannine! It made me nervous to post, so I’m glad the response has been positive!
What a great post on the subject. I get a little sad when people start rattling off all the diagnoses a child has as if that fully defines them as a person. Rather, they are so much more than any one attribute.
They are more than their diagnosis.
Bravo, mama. Thank you for standing up for what you believe in and embracing your son for the wonderful person he is without sadness!
Thank you Erin!
This is such a refreshing take on parenting an autistic child, thank you! I’d like to think I’d be like you in the same situation (I’m not a parent) because what you’re saying here strikes me as common sense. I especially agree on the “Super Hero” issue. It’s a sad state of affairs when being a decent human being is so rare as to be note and newsworthy.
The super hero issue drives me crazy!
I absolutely agree with your point of view!
Thanks, Natalia!
A special needs prom? Really? I like your perspective on [almost] everything.
Thank you, Jill!
Seems like people get offended at the slightest thing lately? Who really cares how you say it? really? What matters is finding causes, cures, or treatments. Sometimes I feel people like to be more part of the problem than the solution
I prefer that we focus research on finding better therapies that help autistic people live their lives more comfortably.
Dear Di.
We, the Autistic Community, are all pretty sure we were caused by getting born and we will be cured by living a long and healthy life where we are respected and accepted exactly as we are.
Absolutely agree, Qatana. <3
As an autistic person, I DO NOT want a cure thank you very much. I am autistic because it is every fiber of who I am it effects everything I do.
But I DO NOT WANT A CURE! Very few #actuallyautistic people want a cure. We like who we are.
“For success in art and science a dash of autism is required” – Hans Asperger.
Agreed, Valerie. <3
You are a courageous mom for going against the norm. It does make your family a rainbow.
Thank you Beth, you’re so sweet!
This was such sweet and touching story!!!
Thanks Nikka
What a great post. I wish more parents were like this. This is a great resource.
Oh thank you so much. :)
Very nice post, it’s good you are sharing your ideas and thoughts.
Thank you, Bri!
It would be very awkward to introduce myself by saying “I am a flutist, arranger, and blogger that happens to have a choleric-sanguine temperament.” I am a/n autistic, choleric-sanguine, ENTP-A, gamma ILE (ENTp), High D, Inventor Rational, and an Explorer Inventor. No one has a problem with me identifying with my temperament, so I don’t see why anyone should need to have a problem with me identifying as autistic.
I completely agree! It seems silly that everyone is completely fine with me saying that I’m epileptic, or that Mr. C is gifted, or that A-Man is energetic, but it’s suddenly terrible if I say that he is autistic? Just doesn’t make sense. Happy to hear from you, I’ve been missing your comments! <3
I wish others looked at disability through the lens of temperament. A High D and a High C that are disabled in the same way will go about it differently.
I always appreciate your insights. :)
What an interesting perspective. My kids are not autistic, so I am not sure how I would approach this topic in my own circle. I think that whatever works for you and your family is the best thing though. Figuring out ways to show support to others’ unique situations is what I try to think about!
Very true, Heather. Some people do prefer to be called “a person who has autism”, and if they ask that of me I definitely respect it. Showing support is definitely what’s important!
Kaylene, thank you for sharing your perspective! I’m a Licensed Professional Counselor who works only with clients with disabilities (Autism chief among them). Most people are genuinely confused about what I do as soon as I tell them that I don’t do ABA, just regular old talk/CBT based therapy. It’s nice to know that there’s a growing contingent of parents who recognize that the right therapy for their child may not actually be what’s most trendy. I also love your thoughts on person first language; actually putting people first has precious little to do with the words you use, and everything to do with what you’re trying to communicate. Glad to have found your blog!
I am so glad that you found it as well! I am so glad to see a professional that isn’t pushing person first and ABA. (I can’t count how many have been SHOCKED I am not dying to try ABA therapy). I hope to see your comments more in the future!
I really appreciate your strong perspective on this, it’s definitely a different view on some of the struggles of raising an autistic child! I can’t imagine how difficult it must be, even to find a good therapy program, like you described!
Oh thank you, Kelly! I agree, it’s a very different perspective!
It sounds like you’ve done a lot of hard work getting to a place where you are comfortable and accepting of what works for your family. I think that’s what is important.
Thanks, Paula. I agree, it can be a process!
Although I don’t actively search out autism parenting blogs I do find myself reading them fairly often and I usually end up feeling frustrated, I’m an autistic college student and I’m writing my senior thesis on activism and autism and so much of what is being written on a lot of the blogs goes so directly against what autistic people are telling me that they want and against what beliefs I hold dearly. So many of them are damaging to people on the spectrum, and when adults on the spectrum try to talk to them about it we’re so often shut down because they don’t see us as being like their children or don’t think our opinions matter because a lot of us aren’t parents. So it makes me really happy when parents like you have blogs where you’re explicit about why these other parents are problematic, I hope they see it and take it to heart. I also just love seeing parents talking about parenting children who are like I was in a way that I wish I had been. I’m glad that there are people like you who are so clearly doing good by their autistic and allistic children alike.
Denise, thank you so much for your comment! It’s been very frustrating to me watching the disconnect between autistic self advocates and parents of autistic children. I am by no means perfect, and I’m learning more every single day, but I will always try to find voices of autistic self advocates and disability self advocates and use their words to mold my own parenting as much as I possibly can. I think that would be a fascinating thesis project! Wishing you luck, and thank you so much for sharing your thoughts!
I used to think like you until my gifted and autistic son hit puberty. After 5 years of hell (for him, me and his sisters), I now think of autism as a curse, sorry ?
I’m sorry that you feel that way.
I have an autistic son and I am a special education teacher. I also read blogs by autistic adults and teens and i think you are generalizing ABA therapy, especially the more current practices.
our aba goals are entirely focused on enhancing communication and developing functional skills. My son has learned how to express himself through a picture exchange communication system and his receptive language skills have blossomed. He is fully allowed to stim and sensory-seek in safe ways. Aba has actually helped him be able to ask for accommodations like turning lights off or asking for help with scratchy clothes and so on.
I know there are many unqualified people claiming to do ABA therapy but that doesn’t mean the whole field is bad.
I feel like my son didn’t even understand what the point of verbal communication was before he started ABA and now he’s finally listening and understanding the utility of language.
Meg, there are definitely some “ABA therapies” that are doing good things for autistic children. I’m working on a full post to clarify, but I’ll try to summarize a bit here. Many of the “more current practices” aren’t actually ABA therapy. Insurance only covers ABA, so lots of places are calling their alternative therapies ABA in order to get paid by insurance companies. Traditional ABA therapy is what I’m referring to here. It sounds like you’ve found a great fit for your family! My son has also had a lot of success with PECS, he learned about them from his speech and occupational therapists.
this made my day, thank you for writing it. as an autistic adult, i feel i ought to be the consulted authority on my own experiences, but it’s astonishing how many ‘autism moms’ are ready to talk over me, quoting other allistics who, for instance, work with special needs kids, in order to refute my factual statements about my life and needs. it gets really upsetting.
so an article like yours is a breath of fresh air. thank you for seeking out autistic people’s opinions and narratives. thank you for considering your son’s uniqueness valuable. thank you for supporting helpful life training therapies instead of the doggie obedience school that is ABA. basically, thank you for being an excellent ally and a supportive voice. i sincerely appreciate it. <3
(found your post via tumblr, btw: http://jumpingjacktrash.tumblr.com/post/137298182564/yes-i-say-hes-autistic-and-other-reasons-im-an — check my 'actuallyautistic' tag if you're interested in reading life experiences and opinions from a happy and thriving autistic adult. ^_^)
Thank you so much, Jesse! I totally agree that autistic adults should be considered the real experts on autism! Happy to be an ally and supportive voice. :) I think that my purpose is simply to amplify the voices/opinions of autistic people, never cover it! I’ll definitely look for your posts over there!
Thank you so much for writing this. I was linked to it by a friend, and after reading this post and several others on your blog, I am impressed by your openness to considering different paths and perspectives before making a decision and by your commitment to learning. As an autistic student working on a degree in psychology (with the goal of providing counseling and therapy for autistic children and adults that will adapt to the goals of the individual and never force compliance) I am always pleased to see that there are parents out there who care more about their child’s wellbeing and their own education than about the kind of trendy activism that is more focussed on the “activist” than the people they’re supposedly helping.
Thank you also for taking a firm stance on subjects where autistic voices are so often ignored. It gives me hope that more parents (particularly of autistics) are beginning to consider their children’s wants and needs in addition to their own. It’s heartening to think that people are beginning to shift towards your perspective and so younger generations will endure fewer hardships than older ones.
I think you will be an excellent mama to your kids. That is to say, I believe you already are. I know I wish I was treated the same way you’re treating them.
Oh thank you, Li. I am so honored by your comment. I am so thankful to voices like yours that are giving me some insight on the way I can best advocate for my son in a respectful manner. I think, as parents, our goal should be to amplify our children’s voice, not squash it or try to speak over it. I’m excited that more autistic adults are getting more involved in respectful therapies!
I am an autistic adult, and it was really reassuring to me to see that you and other parents are able to simultaneously embrace your autistic children for who they are, without making a huge story about how “difficult” it is to “deal with” them, or how much of a “hero” you are for loving and raising autistic children.
I had always struggled through life as I grew up, and even after looking into it online and figuring out that I was most likely autistic, my mother would hear absolutely none of it and refused to believe that one of her children could have such a diagnosis– I ended up not being diagnosed until I was seventeen!
I’m so glad your children have such a supportive mother, who won’t try and use the “trials and tribulations” of raising them as some sort of sob story to make herself seem like a martyr.
One comparison that always rang with me and helped me come to terms with my autism was where everyone’s brains are all likened to computers. Autistic people don’t have any kind of broken code, we are just running a different operating system! Like Macs and PC’s, both can browse the internet, run applications, make text documents, and have the same basic functions– but the way you navigate and use the computer is a bit different, and some of the things Windows can run, Macs cannot, and vice versa. Each has their strengths and their weaknesses; it’s just a matter of getting used to the operating system in question!:)
I absolutely love that analogy! I’m so sorry that you waited so long for an official diagnosis. I’m really trying to share our family’s story, being honest about his strengths and his challenges without acting as if I’m some sort of super hero for simply being a mom. Glad to hear you agree!
As an autistic person, THANK YOU. Keep on doing what youre doing. Your son is lucky to have you.
Oh thank you, Clementine! I’m even more lucky to have him. <3
Thank you from an autistic adult. This is lovely to hear in many ways that I’m too tired to elaborate on. Keep being an awesome parent and well done on raising your kids with love
Thank you so much, Alex! :)
as an autistic person myself, i love what youre doing here. i wish more people did this instead of pretending they care to make themselves feel better (even if they might not realize it)
although there are people that dont mean it, and genuinely mean well, i think youre making a wonderful choice. hope your son and you have a great day :^)
Thank you so much!
Hi. I’m autistic. I was never diagnosed until I was old enough to figure things out for myself. My mom is actually a really good mom. I had delayed learning skills and while this didn’t get me diagnosed with autism, I was with learning disabilities. My mother took me out of school to patiently teach me how to read and even speak. She’s amazing and I owe her a lot but she herself was raised with the whole stigma of anything that isn’t neurotypical is bad. She’s open-minded though and has slowly been unlearning things she’s believed her whole life however, it’s been really hard for me for my mom not to understand how the things she does in relation to my autism are hurtful. She’s been in my corner my whole life but when it came to me being autistic, she was suddenly against me.
Reading this article actually made me cry. Blogs made by autistic parents usually make me uncomfortable but not yours. Thank you so much for sharing. I wish every mom of an autistic child was like you.
Oh Marcey, that sounds like such a struggle. I’m so happy that your mom took the time to teach you (I’m homeschooling my own little ones for similar reasons). Also, I think you’ve written with such patience and grace. As a mama, I’m thanking you on her behalf. We’re all trying our best, and it does take time to unlearn what we’ve been taught. I love that you are helping your mom to learn about neurodiversity just as she helped you learn to read. <3 Hugs to you, friend!
Great post! It’s good to see a parent speaking out against ABA! It’s really vile, but far too many parents seem to accept uncritically “therapeutic” methods I would feel wrong about using to train my dog, never mind a child. I was subjected to it as a kid back in the 90s, so I can say first hand- that shit is useless at teaching real skills AND is too often abusive. I got off fairly lightly compared to many of the first-hand accounts I’ve seen from other autistic adults, but it still made an unpleasant impact.
Also well done on the identity-first language! Your son is lucky to have a mom who sought out the perspectives of people whose brain works like his does rather than their parents. :)
Thank you so much, Mica, and I’m so sorry about your experience with ABA! Some of the “therapies” I’ve read about really make me feel ill. I know that parents are simply doing their best and what they’re told is best for their children, but I can’t imagine it. I have recently learned, however, that some places are calling their therapy ABA to get insurance coverage when it isn’t actually ABA at all. I’m praying that most of the people who’ve been angry at me about calling out ABA practices are in that type of therapy.
I absolutely love this post. As a teacher, I believe in including students rather than excluding or singling them out. I loved reading your point of view about things – especially things within the autistic community and how you feel as a mom. I don’t think enough “real talks” are had about different topics. I love that you don’t feel a need to fit into some sort of mold. Each of your kids are definitely lucky to have you as a mom. :)
Oh thank you, Pam! That really means a lot to me! I definitely agree about inclusion. :)
Such a wonderful article. So thoughtful. Its hard to talk about this topic, let alone freely write on a blog. Hats off to you!! You are doing a great job!
Thank you!
You are a brave mom because some moms want to be popular or correct! Kuddos mama! You are a great leader, use your platform!
Thank you so much!
I’m an Autistic adult and I wish my mother would have loved me the way you obviously love AND respect your son’s existence. I have much hope and happiness for your children and their future.
Oh friend, I’m so sorry. It is my hope that by spreading these messages there will be more mothers who learn to love and respect their own autistic children and other autistic people. <3 Thank you for your kind words.
Being on spectrum myself I find it refreshing that you can share your own point of view and family experience with autism for exactly that….YOUR OWN, Most are quick to judge for what is considered to be politically correct terminology I like your take because you weren’t following sheep mentality.
Thanks so much, Kris! It’s so true, I wouldn’t ever try to tell stories from my son’s point of view. I will not cover his voice, I will only work to amplify it. :) Thank you for sharing your thoughts!
I have an adult autistic daughter and her son also. We have faced challenges and overcome much in their lives. Your article is amazing…..I have always said, they are autistic to people. Most smile and nod and only a few were mean. My grandson is also biracial which seems to make people worse. They are my life and I would never change them for society. They are brave and love to try everything. Life is one adventure after another. Thank you for posting about your son, you are doing wonderful.
Oh Brenda, thank you so much for your kind words. Our kids are a blessing! <3
I needed this so much. After my daughter was diagnosed I had a friend (who has an older child with autism) tell me “I know you want to see this as ok or happy but it’s not you will see” and after telling her I wasn’t sad she said “well you will be”. She could not have been more wrong. My daughter is sweet funny and wonderful and I have never had a moment where I wished she was anything less then who she is. She is perfect. Having ADHD myself I know that while disability can make things challenging they make you who you are and I wouldn’t take away my daughters autism anymore then my ADHD.
Oh mama, I am so sorry that your friend said that! How rude! I’m glad that you found this post, and I hope that you stay encouraged. There are so many blessings that come with autism. <3
I love, love, love this…. all of this! Thank you for being a non-autistic mama nurturing and loving her autistic kiddo and keeping it real. I am an adult Aspie (though others have informed me on several occasions that is no longer a formal diagnosis even though it was my diagnosis in the 90s). I have an Aspie teenage boy. My uncle is an Aspie and my grandfather was, too.
Other parents I have come into contact with are shocked when I refer to my son as an Aspie or Autistic. His teachers initially had a problem with me saying it in front of him. I feel that if you are to love yourself you have to love and accept all of yourself, no matter what. I feel very blessed to come from a family that understands that more than most… and I feel blessed to have come across this post via Pinterest.
Hi there,
I enjoyed reading your post. I work with children on the spectrum and I really enjoy hearing parent perspectives. I really believe they will help me in my profession in the future.
I was a bit frustrated with your commentary on ABA therapy though, As someone who has worked in the field for 4 years and is currently getting their master’s in the area, I can assure you there is nothing abusive about the practice. I really encourage you to do some more research on how ABA is truly run, as it sounds as if you’ve had a bad experience. I only say this because the therapy you’ve described as people trying to slide in under insurance as ABA (which is almost impossible, as you need to have a licensed BCBA to bill for ABA) really just sounds like Naturalistic teaching, which is used all the time in ABA.
Don’t get me wrong, I am not trying to change your mind and encourage you to put your child in ABA. But it seems to me that you have a very far reach and there may be parents looking for answers that could find help within ABA therapy who are turned off by your strong opinions. Your blog post puts it in a bad light, when really, it’s extremely beneficial and helpful. Maybe talk to a few different therapists and see what it is really like before encouraging others to disregard a data driven, extremely effective therapy.
You have some really great opinions on things and I’ll definitely be following to read about your many adventures. Your kids sound adorable :)
Hi Liz,
Thank you so much for your comment. I really appreciate hearing different people’s opinions. I actually have a whole post planned about the ins and outs of ABA therapy, but here’s a few thoughts.
First, I think the biggest issue is that I am referencing traditional ABA therapies. Many disabled self advocates are suffering from PTSD from abusive ABA therapies that they’ve been subjected to as children.
However, not all ABA is abusive, and not all ABA therapists follow the traditional (old) practices. Rather than encouraging people to never ever try ABA, I would recommend that people research the practices like crazy, talk with their specific therapist about their values and goals, and stay extremely involved in the process.
I don’t agree with any therapy that has the goal of making autistic children act neurotypical, but I do support therapies that help autistic people better cope and interact with the world around them.
Also, I did want to make clear, I do not have a personal experience with ABA. It isn’t something we’ve tried with our son (yet, at least). My opinions are formed largely from discussing things with autistic adults and teens about their experiences.
Thank you again for your comment, I hope that you find the more in-depth ABA post when I do post it (likely in May) because I would love to hear your thoughts on it. I’m so happy you found my little corner of the internet, and I look forward to hearing your thoughts!
Hello there! I have found reading all of this very interesting and helpful, and as the mother of an “autistic” 14 year old boy, I whole heartily agree with you on getting to know things from the autistic person themselves. I subscribe to “Aspergers united”, a magazine run by, and for, people with autism, and have found it a wonderful way to help me to understand better. The terminology thing is an absolute minefield and is one of the reasons I stay away from the special needs parent groups etc. My son’s happiness and well being is my number one priority and I have no patience with all that precious nonsense. It is refreshing to find that I am not alone in my anti-PC attitude. I have found though, that there is also the same argument within the autistic community itself, which makes it even more difficult: but, like you, I would respect the individual’s wishes on how they prefer to be identified.
I believe that my son’s autism has made me a better person, but that is not what defines him as an individual; it is a part of him,which we accept and do what we can to help with the problems it gives him.It breaks my heart to hear how other parents deny their children the care, support. understanding, acceptance, respect and love that they deserve. Happiness to you all.
YES! I felt so alone in a lot of special needs parent groups. I have actually been told that my opinions didn’t matter because my son wasn’t “autistic enough”. It’s a sad and divided community.
Hey there.
I just have one comment to make as regards your blog post – and the reason I’m harping on it is precisely because it’s the one thing in my mind that falls short of perfection.
I really like the blog post otherwise. I genuinely can’t express how much I like it otherwise and thank you for not being one of those autism moms – amazing that it is unusual enough that I feel the need to express my thanks for it but I do and the fact it is common enough isn’t your fault so….
“behaviors exhibited by autistic children in order for them to be able to fit into society more easily. ” – No., Just no. No. If it was about that, I doubt anyone would have any objection to it.
The problem of course is that what ABA de facto is about (because there is ABA de jure where it’s OT/PT called ABA to keep the insurance companies happy…this is according to Autistic/autistic people who have actually had it…though I’m on the spectum as an Aspie … I never had it because…. cultural differences in England, essentially) is that it is not at all about helping the autistic child. It is about suppressing the autistic child and forcing them to live a lie to make society FEEL better and to make society SEEM like they’re doing something good so…there’s that.
Signed, an adult on the spectrum.
I think that we agree. Traditional ABA is not to help autistic children at all. It teaches them to act neurotypical to make society more comfortable. There are, however, therapists who aren’t using traditional practices but call it ABA for insurance purposes. Altogether, I do agree. ABA therapy at it’s core is not for helping autistic children. Sorry that didn’t come across clearly in the post! <3
I think you would like PLAY Project.
http://www.playproject.org/
That looks great, thank you for sharing!
Hello Kaylene,
Just thought I would let you know how much I have enjoyed perusing your blog. I stumbled across it while looking up blogging information (I am a new blogger myself) and enjoyed reading your transparent income reports. Thank you! From what I can tell, you are the only (or at least one of the few) that shares their early income reports. But once I started reading your perspective about raising an autistic son, autistic organizations, therapies, etc, I was hooked! I truly appreciate your genuineness and vulnerability; it has given me a lot to think about. It has made me more aware of my language and mindsets. I look forward to reading more articles in the future!
Sincerely,
Andria
Oh thank you so much for sharing your thoughts. I’m so glad you found my little corner of the internet! I’ll definitely check out your blog, and feel free to reach out if you have questions! I love to chat blogging!
Thank you! And this post spurred a conversation with my mom. I just read the whole article out loud to her at my house. :) And I will def. reach out to you for blogging advice!
I feel the same way you do about a lot of those topics. I like to hear from adult autistics, they’ve been through it already and offer wonderful insights into my daughter and even into myself.
It’s so true! I’ve learned so much since I started connecting with adult autistics!
Thanks for this. Thanks for putting it out there. As an Autistic it is a constant battle it seems with the negative brigade that just wants everything about us to be seen to be horrid, terrible, life-destroying drama.
I love this article! I wish more parents would view their autistic kids the way you do :)
Kaylene, never feel the need to apologize for sharing what you believe, nor do I think you should be worried too much about popularity or ruffling a few feathers in the process. Sounds like you are doing what parents do best (or at least aught to be) which is to love and accept their kids for who/what they are. Never get discouraged – I think you are doing an awesome job – keep it up! Hope things are going great for you and your family! – Cheers!
What a gorgeous little man! Also this post is absolutely fantastic.
My son is autistic and severe rapid cycling bipolar. So, there we are. Unpopular but thriving. We were accepted but NOT WELCOME at the Boy Scouts of America so we LEFT to join BPSA-US…where everyone: boys, girls, adult are all warmly welcomed and included in the adventures. Here is my favorite Book and training kit from Autism Empowerment: http://www.autismempowerment.org/autism-scouting-program/
“Two roads diverged in a yellow wood and I chose the one less traveled by and that has made all the difference” – Robert Frost
One good thing about a special needs prom is that it is another opportunity for your child to meet other people with special needs. For that reason, I would consider taking my son to one if the opportunity came up. It is great to be included, and my son has some great opportunities for inclusion. But being included with people who aren’t really your peers, with people whose role in your life is more like that of a much older siblings, aunt, uncle, or parent, even if they include you and invite your their parties and make sure you have a role in their community, well it isn’t really the same as getting the opportunity to be on somewhat the same level as at least some of your friends. Finding friends that you have something in common with is hard enough for most of us, but it is especially difficult for many people with special needs. They need all the opportunities they can get to meet people who might one day be both their friends and their peers. (My son isn’t only autistic and non-verbal but also has Down syndrome. Grammatically, it gets sort of awkward trying to stick to either person-first language or identity language with this mix, so I take a more relaxed approach and just don’t worry about it; how it comes out depends on the sentence and on which diagnosis is more relevant to the discussion. My son is old enough to have lived through this transition from mental retardation/mentally retarded to MR and DD and various other terms that were tried out, and eventually to Intellectually Disabled/Intellectual Disabillity and finally to the current sanitized fad: ID. I tend to wonder if all of this running away from terms really amounts to not wanting to acknowledge the reality because we find the reality just too embarrassing to talk about it. So I have a long history of contemplating what is really behind certain politically correct terminology. I find I’m attracted to the movement to just “say the word.”)
This is a great article! The one thing I would say is that my 16 year old, 6 year old & 5 year old went to the “special prom” night at our local church last month. It was a dream night for all three of them, but especially my 16 year old. She has terrible social anxiety and would never, ever be willing to go to a prom with her peers, so this offered her a perfect opportunity. It was a huge blessing and I was brought to tears to see her treated with such a special and honoring way by the host church and many volunteers! Yet, I understand and agree with much that you said! Keep it up:).
I’m a mamma of 7, 4 adopted “special needs” from foster care & you are so correct, I am NOT an angel or a superhero!!! ALL my kids are God’s precious gifts to this world and to me, it is not “amazing” that I love them all.
Not exactly sure when u wrote this but honey..spot on.I’m not involved in alot of communities..I have soon to be 10 yr old ASD son.I have soon to be 12 ADD/anxiety dghtr and my lil guy 6..undiagnosed but something there..early invention,SLC class and IEP already,just like big bro.I’ve never thought there was such a roar in language.my son is my son..my ASD son.ur so spot on..it’s just being a decent human being already treating people the same.why is it news or makes someone special or good on ya super mom to just be the mom ur kids need.yeah..my child maybe difficult due to meltdown or behavior..but it’s not completely him..it’s just a part of him.what about the good part..the kind,love of animals,the sharing,the goofy,the think out the box,the funny and loving part of him.?I really loved ur article and considering Im just about the same way.people become too sensitive to be real..everyone’s offended.don’t people have value in themselves. .is everyone so entitled??my son needs his services cuz for everything we been thru..it’s finally getting a tiny better.but being treated as a human being that has many parts,not just one,is not entitled.it’s a given.me..I’m me..a mom to 3..ima dghtr. .ima woman..sometimes I’m not good w/words.some children just need more help and how boring this world would be if we were all the perfect barbies and kens…??my oh my.thx for sharing!!
Hello. I am an autistic child (well, a Near-adult who was diagnosed with Asperger’s until the Doctors who updated the DSM-5 decided to be stupid. . .)
I rather like your articles, and They are fairly powerful to me. I’d like to know- Have you Read Neurotribes by Steve Silberman? As far as I know he’s not autistic but it does raise some great points and it’s against Autism Speaks, Too. 9I listened to it with my father when he didn’t hog the car all to himself, and it’s a great book.)
My problems differ from other peoples, as a person with “Autism” I don’t have trouble recognizing emotions, or talking. I have self-esteem issues, Major Depression, Anxiety, Etc. I’m not Epileptic though, so that’s good. mainly just fat :|. Been going to public school my whole life (Younger brother was ‘bad’ enough that he got approval to go to a private school that’s really good for people with Social Disabilities, which he has) Frankly, I like neurodiversity, but I can’t help getting mad at my brother sometimes because he says the same fact like 5 times a day or barging into my room to tell me something that I already know or don’t care about. Personally, my biggest problem with Autism is not the fact that I cannot communicate, but that people are not willing to talk to me because they assume I am a jerky know-it-all. My Therapist knows Different! (For Depression, Autism is unmedicated. ) Just blabbering, Sorry!
Can you say it a bit louder from the people in the back. As an aspergers girl I cant tell you how much I get annoyed when someone will try to correct my language to be person first. You can not seperate me from aspergers and I dont want you too. People have always said things like Im sorry you have to live with that, arent you mad you had to have that and the answer is no. Having aspergers is part of who I am and I wouldnt have it any other way. Does it make life hard sometimes yes but thats mostly because people want me to just be “normal” if nobody was concerned about how to make me normal I would be just fine. I will always be greatful that my parents never even considered ABA, I cringe watching it. Keep doing what is right for your Autistic son he willl thank you for it
Hello!! I loved your article and points. However, I’m a little torn on ABA. From my understanding (my own son starts next month) the ABA therapies/techniques that were used previously that autistic adults say were abusive (I’m not doubting them) are not going on today. They are powered by positive reinforcement and reward. Or so I’ve been told. I’m in several large online support groups for autism and nearly all of the children absolutely love it. Parents submit videos and such. The ones who say they didn’t like it, sounds to me like they didn’t give it enough time. For example the first 3 times I believe my son went to speech he was NOT having it. Yesterday he was dragging me through the door INTO the place. Lol. I think the newness was just unsettling at first. I hope he enjoys it and he gets some real breakthroughs. He is severe. And while I don’t want to “cure” him I do want him to learn how to better communicate his needs, etc. He is 1 of 4 children, and has another sibling with HF (I don’t like that term because it implies others such as my son are low functioning) ASD, it’s just really tough for me alone to focus intensely on him alone. He is already in 4 therapies aside from the impending ABA, but they are mere minutes a week. He however LOVES when he does therapy.
I’m hoping ABA will also be a success. So we shall see. Definitely not trying to deter the stim though. We stim with him! :)
Hey Amanda! I completely understand your points. There are some ABA therapists that are doing more modern practices, but still call themselves ABA to get insurance coverage. Unfortunately, there are definitely still ABA centers/therapists that do follow the abusive practices. :( I’m also a mom of many (we just had our fifth) so I completely understand needing our kiddos to have the ability to communicate needs. You’re listening to autistic voices and advocating for your son. I believe you’re on the right track, mama. <3
Thank you so much for writing this! I completely agree!
I’m autistic and agree with most everything you say. I actually prefer autistic because it’s part of my identity. ABA can be harmful and many times leads to ptsd. Parents aren’t super heros for loving and taking care of us. That should be the norm.
I think we all want what’s best for our chikdren *hopefully*.
It does sadden me to know so many people think ABA is abuse. My son is autistic and intellectually disabled. He has received ABA services for 2 years now. Because of the repetitive nature he has learned SO SO much that it makes me cry when I think about his congnitive level and his ability to trust and communicate compared to before ABA. The Behavior specialists’ and his teachers have never once stopped him from stimming -and he gets a break whenever he needs. If it is during time that he is “working”, if he requests a break (I.e. visual cue) he is given that break. The only behaviors that they have worked on changing would be self injurious behaviors. Otherwise he is 100% allowed to be who he is, and they have never tried to change that. We have worked with different agencies and school departments. I am unsure if geographically ABA is taught differently, but it hurts to know something that is so incredibly positive and necessary for my son -Other people would perceive that as us wanting to “heal or cure” our son? That is the farthest thing from the truth. We just want our son to be able to respond to his name and help him be able to communicate with other people besides his immediate family so his needs can be met in other surroundings. Just like how person first language and acceptance has evolved – so has therapy techniques. It’s disheartening to know that ABA could still be taught this way – but from my experience it is just not so.
I know my experience is different than a lot – especially because of the intellectual disability – maybe that’s why ABA is our savior. I hope I was able to shed some light on something that can truly be a positive experience for some.
I love the blog as a mom of 2 special needs kiddos, I totally get where you are coming from. Our oldest has several difficulties and we have been trying for years to get a proper diagnosis so he can get the help he needs, while our youngest has as the Doctor called it text book Autism. I like you don’t care about the why or the how I just care that they have the best life. I will never be that parent that tries to cure my kid and I feel sorry for the parents that do try to cure their kids, because in my eyes those parents are saying their child is not good enough and could or should be better. I to am trying to educate the world about Autism and that autistic kiddos are the same as other kids they just have a different operating system. I’d like to get you thoughts.. check out Enny Autism on Facebook and send me a message I’d like to chat further.
Mamma B.
I just found this on Pinterest. I LOVED it! Well said 😊
Hi my son is 3 and half almost 4 on the 4th of July. He is the baby and only boy of the family. 3 older sisters! My youngest daughter is 15 months older. We have to decision to make, whether to homeschool them both or Henry would attend ppcd and Ruthy would start kindergarten in the fall but Im just not sure its right because his sleep pattern is so all over the map. Also should I homeschool one and not the other. Ruthy is a social butterfly and needs friends as much as Henry should be able and loves to interact with other kids too. Any suggestions for this momma over here? I guess what Im asking is how can I be sure homeschooling will be right vs. Public school?
I so relate to this. Sounds bad, but most moms hate me but every once in a great while when she has a public meltdown I get a “You’re doing great” from a stranger and it’s like a pat on the back – much like this article.
I’m glad there’s autie mamas sharing their genuine thoughts and not worrying about being “unliked”. It’s hard work, but we only do it because we love our kids.
My hubby and I met with 11 different therapists until we found the right ones for our son (for ABA). He is allowed to stim and express his likes/dislikes with SPD. It’s work on our part, but seeing how much it has helped him makes it worth digging for just the right people. I always let therapists know how my son behaves or reacts to specific situations to avoid having them “correct” how he expresses himself. It’s understood, obviously, that every kd is different and benefits from different therapies. And there’s absolutely nothing wrong with that. I think as parents we just want what’s best and what works specifically for our kids.
I also have always referred to my son as autistic…people look at me like i just told them he has a highly contagious rash. But sometimes people just need to hear it for what it is.
Nice reading this post :)
I really enjoyed this post and totally agree with so many points! I am a special educator and lead a special needs ministry and hate being told “I’m such a special person.” I love my students the way every other teacher loves their students, teaching students with disabilities doesn’t make me any different. I did want to pipe in on the person first language points. I have also met self advocates who prefer not to be addressed or discussed using person first language as well as parents who have told me they prefer for people not use person first language to address/discuss their child. However, I feel like in any other case, it is always most appropriate to use person first language. Not because it is “politically correct,” this has nothing to do with politics, but because people are so much more than their diagnosis. I feel like when talking about a whole population of people or someone that you may have just met, person first language is a must. I never want to assume how someone wants to be identified, and if I don’t know their personal opinions, I would never want to lead with a diagnosis. I think that self advocacy and parent preference is incredibly important, but don’t think that individual opinions should establish the case for everyone. I believe that person first language has a place, but maybe just not for every person.
On point post! I call my son autistic and don’t feel that makes him “less” of a person. Do I wish others saw him as just any other child? Absolutely! He puts a smile on my face and others every day. My husband even says he wouldn’t change his autism because that would be like changing his personality Yesterday, while waiting to get gas on our boat, he was waving to people and saying “Hey there, what’s your name? Are you having a good day?” He was being so personable and sociable but others would think “He’s a little odd.” Thanks for sharing what many of us think!
I love this!!! I too say “My son’s autistic because it’s what makes him the most amazing kid in the entire world! And it also gives me a platform to help educate the community about autism. Unfortunately, like you, my views are not popular and I have lost many friends & family members for letting my child just “be autistic”; for “labeling him”, letting him stim, or not doing certain therapies, for homeschooling him, and the list goes on. But what I know, is that our family hit the lottery when we were blessed with an autistic child!!!
This post is so spot-on for how I view my autistic child! He is autistic, I don’t want to change that. I don’t want him to pretend to be normal. It is part of him. I want him to know that it’s amazing that he sees the world in a different way, and that he can impact and change the world we live in! I am not sad either, and we don’t do ABA. I refuse to medicate him. I love him wholeheartedly just like he is.
I respect your wish to not use person first language but as a parent of a child with Down’s syndrome I can tell you how important it is for ( mainly professionals) not to assume they are even remotely the same and make decisions without thinking. My son is very different to his friends da with ds. Using ‘child has x ‘ reminds people to stop before they say ‘ downs kids are so loving- they are the sweetest etc’ ( you’d never say that if you met my son. He is a boisterous mischievous crazy 8 yr old) It’s to stop the generalisation when our kids condition is very visible. And people with DS prefer it too. To me he is more then the medical list that makes up DS. But with any child just use the child name! If Referring to a group . I do say autistic children as I know that’s the preferred term in your community. Mutual respect x
Hello, Tara. Thank you so much for your comment. I actually completely agree with you. I believe that language should default to whichever the specific community prefers. I say “child with Down Syndrome” or “person with Down Syndrome” every time, and believe that professionals should as well, because that is what is preferred by people in the Down Syndrome community.
However, the Autistic community prefers identity language as a whole, similar to Deaf people. We see it as our culture and who we are. So just like I would ask that professionals (and society as a whole) default to person-first when referring to a person with Down Syndrome, I ask that they default to identity language when referring to an autistic person or Deaf person. :)
I hope that makes sense, thanks again for your thoughtful comment!
I love your blog! I have written so many FB posts, over the years, which basically share all the same thoughts. You are me, 10 years later, and with WAY more energy. lol. I can’t tell you how many times I started a blog only to get too distracted by therapies and homeschooling to follow through. Your thoughts are spot on. Keep it up!
Kaylene –
This isn’t really a comment but an idea you may want to look into for your column. After reading your article and many of the comments, I really loved that you and others talked to autistic people to get their opinions. Mentally I then moved into how awesome it would be for an autistic kid to have an older autistic mentor who has already been through the challenges the child is facing? A parent may even give the same advice, but from a different point of reference.
Maybe you’ve already addressed this. But either way thank you for a very thoughtful article.
Can anyone help me? I am ending up in court over ABA therapy. I have a 6 year old autistic boy and his father wants him to have ABA, even though he only sees him 2 days a month. Now his father is trying to gain custody because I don’t agree with ABA! I love my son the way he is and delight in every day with him. I don’t want him changed. I want to help him grow and love life.
I found this post on Pinterest and I’m so thankful I did. We found out my 3.5 yr old daughter is autistic and we aren’t sad about it. I was at first but I was also only like three weeks post partum, having just had her little brother so everything was still kinda emotional for me. I’m glad to know I’m not the only one not doing ABA therapy for my child. I was at first, figuring the doctors knew best and blah blah but I had someone who is autistic reach out to me and tell me to do my research on it and I’m so glad I did. My daughter is who she is and no one is going to be allowed to try to make her “normal”. Especially when I read about how some used cayenne pepper spray as a deterrent during therapy. Uh no, that’s abuse not therapy. She is so sweet and loving and I find her stiming (hand flapping) adorable. She is my daughter and she is autistic and I wouldn’t change her for anything in the world. I don’t ever want her to be ashamed of who she is because I’ll never be ashamed of her.
It is refreshing to know there is another parent out there with the similar ideas on aba. I will continue to read your blog and I am fascinated with the knowledge of you being autistic. Must give you a whole new perspective on things. Bless you and your family…
http://www.rockinautism.blogspot.com
My daughter is autistic. She’ll be 14 in July. I swear you are in my brain!!! Thank you so much for this post! Following you via fbook!
Thank you so much for truly advocating for your son (and now yourself by extension).
I’m an Autistic adult who was diagnosed when I was young, but forced to learn to imitate Allistics. I have just recently started reclaiming my identity and my Autistic culture. It’s hard and scary, like being gay and growing the courage to hold hands in public, for example, but I’m getting there with the help of my Autistic roommate who has been reclaiming our culture longer than I have.
I love your blog, and I will be reading and sharing from it a lot in future I think.
Words out of my own heart!
LOVE this article ❤️ I am somewhat new to the autism mom gig, and trying to find my place. I read different things on different sites and don’t always agree, and have been questioning if I am “wrong.”
I never had an issue with calling my son autistic since his Dx, and agree, it makes him who he is. I always felt uneasy about “a cure” but couldn’t pinpoint or articulate my feelings. How could I not want a cure with all of his struggles??? And you nailed it, I want a cure for how society treats him.
I grew up with an older sister diagnosed with MR, and the doctor told my mom in the 70’s to “institutionalize her, you have other kids to consider.” She of course never considered it, and was told throughout the 46 years we were blessed to have my sister, that she was a super hero. She felt the same way… why am I special because I love my child?
Related to and loved everything in this article, but do agree with one commenter on giving our autistic kids opportunities to just be themselves. My son is so mentally exhausted after a week of school, he needs time to decompress, and I know a lot of that comes from having to try to be who the school wants him to be. I also would never consider ABA, but know he still has to conform to some extent in the public school system, or he would spend all of his time “in trouble.”
Thank you for this wonderful read