When I chat with new readers who have found me very soon after they got their child’s initial autism diagnosis, I’m torn between two feelings.
First, I’m heartbroken for them, but not for the reason you think.
See, I’m not about to tell you that I’m heartbroken that “autism stole their child” or that they have to “grieve the diagnosis“…
I’m heartbroken at some of the things they tell me their child’s doctors or therapists have been feeding into them…
- Your child won’t ever talk…
- Your child will never graduate high school…
- Your child will never have any friends…
And because of that… I have parents coming to me DEVASTATED and terrified for their autistic child’s future… And that, to me, is heartbreaking.
But beyond that initial heartbreaking, I also feel so thankful.
I’m thankful that they’ve found their way to our tiny corner of the internet where we know that an autism diagnosis is a good thing.
Where we believe in the neurodiversity movement. Where we believe in embracing autism and autistic children for who they are.
And these parents who are new to the autism-world have found us instead of Autism Speaks or another mom-blogger who only complains about her autistic child.
So, friend, if that’s you reading this today… A parent who has recently gotten their child’s autism diagnosis, and you’re feeling completely overwhelmed… This post is for you.
These are the 5 things I wish the doctors told you at your child’s diagnosis appointment.
And once you understand these 5 things, your autism journey is going to be so much easier for you and your autistic child!
5 Things I Wish the Doctors Told You at Your Child’s Diagnosis
#1 Your Child is the Same Child They Were Yesterday
Oh man… This is SO important.
So often parents feel like after an autism diagnosis they have a brand new child, but that just isn’t true.
It isn’t like a doctor says your child is autistic and suddenly they start stimming and having meltdowns and facing autistic burnout…
The fact is… Your child was already doing autistic things before they were diagnosed as autistic… Otherwise, they wouldn’t have been diagnosed autistic, right?
Because here’s the thing… Autism is a naturally occurring difference of neurology.
And that means your autistic child has been autistic their entire lives.
They are exactly the same person today that they were the day before the diagnosis.
#2 No One Can Tell You Your Child’s Future
Now, this might seem a little bit contradictory but stick with me and I pinky promise it will make sense!
I know I just said they are exactly the same person today that they were the day before the diagnosis… But here’s the thing…
They are NOT the same person today that they WILL BE in the future.
I like to say, 3 isn’t 13, and 13 isn’t 30.
So often you get your child’s autism diagnosis at 3 and they have no verbal communication, and the doctor will say that they’re “non-verbal” and won’t ever talk.
WHAT THE WHAT?!
My three-year-old doesn’t read, tie her shoes, or stand on one foot yet, but no one is telling me that means she’ll never do those things…
The fact here is, no one knows your autistic child’s future.
Your child who doesn’t communicate verbally at three may never be able to, that’s true. But they also could start speaking verbally at 5 or 8 or 12.
All autistics develop on their own unique timeline. So don’t write your autistic child off because some doctor said they won’t do something!
#3 Look For These Autism Therapy Red Flags
Now it’s important to note that I said all autistics DEVELOP on their own unique timeline.
Because some people would look at the last point and think:
“There’s hope! My autistic child might talk one day! We need to jump into each and every therapy available to make that happen!”
And if that’s where your mind went, let’s take a breath.
I am not anti-therapy… My son has thrived with specific occupational therapists, speech therapists, and even a physical therapist for a while for his dyspraxia.
But (and this is a big but!) there are some therapies out there that come highly recommended by doctors or therapists or other professionals that can be incredibly harmful for your autistic child.
ABA, or Applied Behavioral Analysis, in particular, was likely recommended when you got your child’s diagnosis, but that therapy is harmful and the majority of autistic adults are against it.
You can read more about the specifics with ABA therapy here:
- What’s the Big Deal With ABA Therapy?
- Why Even “New ABA” is Problematic
- What if ABA is My Only Therapy Option?
And in general, you’ll want to watch for these autism therapy red flags with any therapy that you start with your child.
Here are some of the big ones:
- Trying to make your autistic child act neurotypical
- Not letting you observe therapy or direct the goals
- Requiring (or encouraging) instant compliance
- Not respecting body autonomy and consent
Again, check out this post for details and a comprehensive list of red flags!
#4 Listen to and Learn From Autistic Adults
Oh how much conflict in the autism community would be avoided if doctors told parents to listen to and learn from autistic adults.
Here’s the thing… Autistic adults were once autistic children!
Each and every one of us has a unique experience from growing up autistic, and we are more than willing to share that information with you however we can!
We share our thoughts on cures. We share our opinions and experiences with various therapies. We share what we wish our parents had done for us when we were kids.
Seriously, we want to help parents be the best parents, advocates, and autism allies they can, so use the information we’re sharing!
In fact, I run an entire membership where parents of autistic children just like you can connect with autistic adult mentors and get coaching, trainings, resources, and guidance.
(PS: Does that sound like the community you need? Be sure to join the waitlist here to be the first to know when we open up this fall!)
But the point is, autistic voices are out there. You found me, but there are so many of us trying to be heard.
If you’re looking for more #ActuallyAutistic bloggers to check out, here are just a few that I recommend:
- Neurodivergent Rebel
- Amythest at Neurowonderful
- Being Kayla Smith (okay, she’s on twitter and not really a blogger, but she’s an incredible advocate and the creator of #AutisticBlackPride. Follow her!)
- Autistic Science Lady
#5 There are Awesome Things About Autism
And the last thing I wish your child’s doctor told you with the diagnosis is that there are awesome things about autism.
I know, you come out of the appointment and you’ve heard nothing but doom and gloom…
But that is NOT the extent of your autistic child’s life.
In fact, I asked in my community for some help, and with their responses I put together this blog post with 25 awesome things about autism.
And bonus? It comes with a free printable with more than 50 awesome things about autism.
You can get access to the printable (and my entire library of autism resources!) for free by clicking here or on the image below!
So basically, autism is awesome…
And while doctors, therapists, and other professionals can be incredibly helpful on your autism journey, there are totally things that they just won’t tell you.
Hopefully now you can see a more positive future for yourself and for your autistic child.
And if you have a friend who just got their child’s autism diagnosis and you think they’d find this helpful, go ahead and share it on Facebook or send them the link in a quick message.
And if you loved this post, you should also check out…
5 Important Steps to Take After Your Child’s Autism Diagnosis
5 Steps to Take While Waiting for Your Child’s Autism Diagnosis