You just got your official Autism Spectrum Disorder diagnosis.
Even though you felt 99% sure you’d get it, you’re now wondering what comes next. Here’s what you should do.
No matter how convinced one is that they’re on the Autism Spectrum, getting that formal diagnosis can be an utterly surreal moment!
Every Autist is different, but there may be some common denominators in what to do following what could be a game-changing event in one’s life: a formal diagnosis.
What to Do Next After Your Autism Diagnosis
#1 It’s Just a Name
You now know, officially, that you’re autistic. One formal word describes your experiences and struggles.
Or, to put it another way, three words do: Autism Spectrum Disorder.
If you don’t like the “Disorder” part of this name, then leave it as Autism Spectrum.
But just because you now have a diagnosis – a name for the way you think and see the world, a term for the way you process information – doesn’t mean you are any less, or defective, or broken, or malfunctioning.
In fact, the diagnosis means you have an uncommon neurotype, that you are NOT missing parts or malfunctioning.
- So don’t let a term out of the DSM-5 unsettle you, shake you up, cause distress or make you feel down in the dumps.
- You’ve already known since childhood that you were wired differently.
- The only difference now is that it has a formal name.
- This is no reason to be discouraged or sulk!
You’re still the same individual, and you know stinkin’ well that your autism is why you have amazing capabilities in some areas!
“Receiving a diagnosis isn’t the start of some long, difficult road full of new obstacles, because those obstacles were there already,” points out Jess Owen, co-creator with her sisters of thewyrdsisters.co.uk and diagnosed with autism at 25.
She continues, “Now you just have a word for it, and a way to move forward and start making the changes you need. And that is always worth celebrating.”
#2 Disclosing Your ASD Diagnosis
There’s no hard rule here. You don’t have to tell anyone you’re autistic if you don’t want to.
But if you’re just itching to tell specific people – people you already had in mind you’d want to tell, prior to your assessment – then share the news!
If any of them didn’t know beforehand that you were pursuing an assessment, then bear in mind that they may still not be surprised about the diagnosis – as were multiple family members of mine who learned of it shortly after I told just one of them.
Brace yourself for the little shock wave of learning that some family members “knew” you were autistic many years before you actually began wondering about it.
It’s all up to you, however, if you want to tell anyone if they weren’t already briefed on your pursuit of a diagnosis.
#3 You Are Not Sick
Autism is a neurotype. In fact, I sure wish that the American Psychiatric Association would change the name to Autism Spectrum Neurotype.
Even though ASD is in the DSM-5, it is not a form of mental illness. It’s just a different way of thinking and seeing the world.
You don’t have to rush into doing anything right after getting your autism stamp.
But you may want to forage through the many articles on autism written by actual Autistics – though chances are incredibly high you had already been doing this before you even scheduled your assessment.
But do it some more. Take some time to watch autistic YouTube personalities.
Don’t feel discouraged if you happen upon a YouTube of a semi-speaking child with stereotypical autism.
Remember, autism is a spectrum condition and presents so differently across all Autistics.
#4 Don’t Resist the Urge to Grieve
Some newly diagnosed Autistics may find themselves feeling overcome with sadness, grief or anger over the realization that they could have – and should have – been diagnosed way sooner.
You may wonder what difference it would’ve made, if “autism” is simply a name that describes a neurotype that affects the way an individual thinks and lives life.
Well, here’s an example. If a woman can’t get a boyfriend no matter what she does, she may just give up, concluding she’s too weird to ever find a suitable partner (me!).
But if she knows she’s autistic, she can at least draw the logical conclusion that the reason she can’t “find a man” is because she’s autistic, not too weird!
Solution? Join a dating service specifically for Autistics!
It’s things such as this that can send a newly diagnosed Autistic into a vat of depression and grief.
Causes of the grieving period also include the realization that years of heavy and exhausting masking (pretending to be “normal”) were not necessary; and that many years had been wasted on trying to be the person whom they were not truly meant to be.
Another realization may be that of finally knowing why you have a history of losing friendships for no apparent reason.
- The grieving period must be allowed to run its course.
- You need to process it, even if it takes many months.
There are several ways to manage it, including joining online autism communities, becoming a self-advocate and meeting autistic people in person.
#5 Meeting Other Autistics and Getting Support
Depending on where you live, there can be many opportunities to get together with fellow Autistics including late-diagnosed ones.
The specialist who diagnosed you may have some referrals, and in fact, the diagnostic report may include a list of agencies that can help out in this area.
I myself have now attended MANY events filled with autistic people, including pizza meetups, meetups at a coffee house and fairs.
If you have challenges that impede the quality of your life, your diagnosis is now a gateway to accessing support services.
Checking out all the possible support services may even be your No. 1 priority, depending on how your autism affects you.
Bonus: What to Do Next After an Autism Diagnosis
Did you already have some plans of what you’d do the moment (or not long after the moment) you got the diagnosis? I sure did!
One of my plans was to buy some autism clothes online: tee shirts and spectrum colored leggings.
One of the tee shirts says on the front: NOT NEUROTYPICAL. THANK GOD.
“I think what you do after diagnosis will always come down to the individual,” says Jess.
“While it might be helpful to disclose it to a few trusted people, look into resources for newly diagnosed Autists, and start thinking about any changes you want to make at work or at home.
“It’s important to remember that you don’t HAVE to do anything.
“I think the key is to give yourself time, keep monitoring how you feel and remember that this is a very big, significant time in your life.”