I’ve told my story about my son’s autism diagnosis process before. How it took us years of fighting his pediatrician just to get a referral to speech therapy.
Then things moved REALLY quickly when our speech therapist told us our son has dyspraxia and also needed occupational therapy and physical therapy.
It was less than a month before we were on a waiting list for an appointment with a neurodevelopmental pediatrician and told we’d “very likely” get an autism diagnosis.
And then? We were on that waitlist for MONTHS.
I knew that my son was likely autistic, but I had to wait nearly a year for the right person to meet us and tell us that he was autistic for it to “count”.
Talk. About. Frustrating.
And my story isn’t uncommon. Tons of parents spend months (or even longer) waiting for an official autism diagnosis like I did.
So I thought I’d go ahead and share 5 specific steps to take while you wait for an official autism diagnosis that will help you feel more confident and prepared when you finally do get that diagnosis!
5 Steps to Take While You Wait for an Official Autism Diagnosis
Okay, so there are 5 specific steps to take while you wait for an official autism diagnosis, but I want to take a break first to acknowledge something.
These steps are super practical, and they will help you feel more confident when you get your child’s autism diagnosis.
But before you do any of these, it’s super important to recognize your feelings surrounding autism.
Are you afraid of your child getting their diagnosis? Spend some time journaling or talking with a friend about how you feel about autism and your child being autistic.
Processing those feelings now will help a TON in the future.
(Related: Check out these autism affirmations for parents if you’re struggling with accepting your child’s autism diagnosis)
#1 Start Learning From Autistics
The very first thing that all parents should do while waiting for their child’s official autism diagnosis is to start learning from autistics.
We are here and we want the same thing you do: For your child to live their absolute best life possible.
So the quicker you seek out and listen to autistics, the easier time you and your autistic child will have!
Bonus: we lead pretty awesome lives, and it can really help you skip the doom and gloom that the doctors will feed you during your child’s autism diagnosis.
#2 Learn the Misconceptions About Autism
I’m going to be honest… While I was waiting for A-Man’s official autism diagnosis, I had a LOT of misconceptions about autism.
And it turns out, I wasn’t alone.
There are so many misconceptions about autism that even the “experts” believe in, that they just continue to be spread.
So take some time while you’re waiting for a diagnosis to learn about the misconceptions about autism!
You can read all about some of the most common misconceptions about autism in this post or you can click the image below and download the free printable!
#3 Start Learning the Language
One of the most common struggles I hear from parents right after their child is diagnosed is that it feels like they’re thrown into an entirely new world with new rules and new language and so much to learn.
So I encourage you to spend some time while waiting for your child’s diagnosis to start learning the language surrounding autism.
Trust me, you’ll thank me for this one.
Some terms you’ll want to check out for sure are:
#4 Know the Signs of Autism (And What is NOT Autism)
Okay, if you’re waiting for an official autism diagnosis for your child, you likely know some of the signs of autism.
But remember how I mentioned earlier there are a lot of misconceptions about autism?
That kind of applies here too.
First, there are a lot of signs of autism that get missed because they aren’t necessarily the stereotypical signs we think of.
So check out this post with 20 important signs that your child may be autistic. There’s even a free printable that you can print out and note which of the signs fit your child.
Then on the other hand, there are some things that people say are a sign of autism, when really they aren’t autism at all.
Things like aggression or anxiety or GI struggles… They aren’t autism signs at all.
So check out this post that explains exactly what autism REALLY is, and what it isn’t.
#5 Learn the Awesome Things About Autism
I’m going to be honest… This is my FAVORITE step for parents to take while waiting for an official diagnosis.
Because here’s the truth: The person who gives you that diagnosis will likely talk a LOT about the negatives.
They might tell you a bunch of things your child will “never do” or talk about how your life is about to get so much harder.
That’s why it’s SO important to take the time now to learn the awesome things about autism.
I asked my Embracing Autism Community for some awesome things about autism and they absolutely blew me away.
You can read the post about it here, or you can click here to download the free printable with 50 awesome things about autism!
If you loved this post, you might also enjoy…
5 Important Steps to Take After an Autism Diagnosis
No One Knows Your Autistic Child’s Future