Don’t let these eight things to know before your ASD assessment end up as “Things I WISH I’d known before my autism assessment.”
#1 The Actual Diagnosis
Even though you’re pretty sure you’ll get the ASD diagnosis, once you see it on the report, you’ll likely get a total tsunami of emotions (pardon the cliché, but it really fits well here).
You will want to ask your examiner many follow-up questions, and quite a few of these may not rise to the surface till weeks after your autism assessment is finalized.
Along with feeling incredible relief and validation, you may also feel hot intense anger at any practitioners in the past who had told you that you “can’t be autistic” – due to having good eye contact, having a job that involves frequent people interactions and other normal day-to-day things that – believe it or not (gasp!) autistic people are perfectly capable of conducting.
So when you go in to your autism assessment, be prepared in that should you get the diagnosis, you may then question it at some point afterward.
You may start telling yourself, “But (name of practitioner) said I can’t be autistic because (description of behavior).”
You should know ahead of time that there still exist practitioners who have an outdated conception of Autism SPECTRUM Disorder.
And maybe you really have been depressed and teeming with anxiety all these years – and hence only got those diagnoses in the past – but it’s entirely possible for an anxious, depressed individual to also be autistic!
Hello? Living in a world dominated by neurotypicals can make just about ANY Autistic prone to depression and anxiety!
Prior to the date on which you will receive the results, make arrangements for a chunk of time so that you can process the results without any distractions.
This chunk of time can be in the form of complete solitude at home with a box of bon bons or a visit with your best friend if possible to discuss the results.
Just make sure that the results day isn’t the same day of a dental appointment, a visit from a plumber or the dishwasher repairman or the day before your annual mammogram, etc.
#2 No Quick Fix
An ASD diagnosis won’t fix your struggles other than, now you have an official diagnosis that can get you some accommodations at the workplace and elsewhere if need be.
But you’ll still experience internal distress over changes in routine, for instance.
God I hate change, and it still bothers me just as much more than a year after my diagnosis as it had all throughout my adult life.
Prior to your assessment, though, you may want to gather information on possible support services or accommodations.
This way, after you get the diagnosis, you won’t feel overwhelmed with “looking things up” and making a bunch of phone calls and whatnot to find out just what kind of support you can get.
Support or accommodations can range from significant to perk-caliber. For example, there’s a restaurant (I don’t recall where) that serves free meals to autistic people!
Check your area for autism friendly service such as hair salons, fitness classes or gyms, housecleaning – whatever comes to mind.
As you compile the list or make bookmarks, you won’t feel overwhelmed if this is done prior to your assessment.
And by the way, autism assessments may take place over a few sessions, and this may include a remote interaction with the examiner after an initial in-person evaluation.
You’ll also want to take note of autism agencies or organizations in your area – ahead of time.
You don’t want to be wondering, “What do I do next?” only after you get your ASD diagnosis – though your examiner may include on the report contacts for various resources.
#3 The Past May Come Back to Bite You
A person seeking an autism assessment may not be able to conceive of anything beyond getting the diagnosis other than, “I hope I get the diagnosis because it’s the only thing that will make everything make sense!”
But you WILL, most certainly, then begin realizing some negative experiences out of your past that, had you been diagnosed way sooner in life, would not have happened — or at least, as poorly as they had.
Know ahead of your assessment that you will possibly be flooded with questions you’ll want to ask family members, mainly:
“You knew all along I was probably on the Spectrum but didn’t have the balls to suggest it to me!”
“You knew all along that I had various struggles but didn’t have the spine to point out I was possibly autistic and that a diagnosis could’ve gotten me some support or been an opportunity to join a community of people I actually had something in common with!”
You may want to lash out at these people. So give yourself time to process the possibility that an autism diagnosis could bring out these emotions – so that when you actually get the diagnosis – your mental place won’t be so … burning livid.
#4 Be Honest on Your Intake Form
Your initial intake form will have questions that dig deep. Answer them truthfully.
You may not want to acknowledge that certain things happened to you when growing up and may be tempted to check “No” for those boxes.
But the examiner needs to know this information.
If your examiner asks about your childhood, tell them everything. Nothing is too trivial.
The examiner will guide you if you become overwhelmed over having too many things to describe.
#5 Tell Your Examiner Your Doubts
If you don’t have the traits that seem to affect every autistic person you’ve read about, tell your examiner.
This way, with everything on the table, you’ll minimize autistic imposter syndrome once you get the diagnosis.
For example, I made it clear to my evaluator that:
- I made good eye contact for the most part.
- I never had meltdowns.
- I never had shutdowns.
- I never had autistic burnout from masking.
- My mask was never heavy; just a light flimsy one.
In fact, I had emphasized all of these items so much that I feared that she wouldn’t give me the diagnosis.
But she did! You don’t want to be kicking yourself, after the assessment, that you didn’t provide enough information or that you “should have told her this” and “should have mentioned that.”
Nevertheless, “A diagnosis might not stop you from questioning your autism,” says Jess Owen, co-creator with her sisters of thewyrdsisters.co.uk and diagnosed with autism at 25.
“Imposter syndrome is a slippery beast that you may well grapple with your entire life; but, hopefully, a medical diagnosis will become a good way to combat it.”
#6 Do NOT Mask During the Assessment
Don’t. Don’t. Be yourself. Stim if you feel a stim urge coming on. Don’t deliberately try to suppress anything.
However, do NOT deliberately exaggerate any odd behaviors, either. BE YOURSELF, no matter how weird you think that is.
#7 Allow Plenty of Time
You may want to take a test drive out to the assessment location to get a feel for what’s involved in driving there, including locating the suite if it’s tucked inside a building full of businesses.
I had difficulty locating the suite for the psychology clinic and had to ask a man in the parking lot if he knew where it was.
Allow a ton of time to get to the clinic. There may be a car accident or construction that screws up traffic. Anything is possible.
If you get there super early, then just relax in your car and listen to some music or your favorite radio station.
Or stim. Or do a crossword puzzle. At least you’re there early and don’t have to rush around.
And make sure you’re well-fed — not hungry, not thirsty, wearing comfortable clothes – after a good night’s sleep!
#8 A Conflicted View of Labels
Don’t sweat this. Prior to your autism assessment, you may not give much thought to the many labels that come with the words autistic and autism.
But it won’t hurt to tinker around with them and reflect upon what you might want to be referred to, once you get your ASD diagnosis.
Choose what feels comfortable to you. In my case I refer to my autism as mild.
Nobody gets to tell me that there’s no such thing as “mild” autism and that “you’re either autistic or you’re not.”
Well, a person either has osteoarthritis or they don’t, too, but there’s still a such thing as mild osteoarthritis!
Something Else to Consider Before Getting an Autism Assessment
“You can’t be un-diagnosed; an autism diagnosis is with you for life, and unfortunately (depending on where you live) it can stop you from doing things like joining the police or donating genetic material — so have a good think about that before you go ahead,” says Jess.
However, it’s reasonable to believe that many diagnosed autistic people don’t disclose this information when applying for jobs or training, or during job interviews.
Because autism is not considered a mental health issue (it’s a neurotype), an Autist may not feel a need to disclose it if a question on an application pertains to a “mental health” or psychiatric history.
Jess Owen, along with her sisters Emily and Abi, run thewyrdsisters.co.uk, about autistic sisters navigating a neurotypical world. Their goal is to spread information and awareness, and open up a conversation about neurodiversity that will make life easier for everyone.
Lorra Garrick has been covering medical and fitness topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer. In 2022 she received a diagnosis of Level 1 Autism Spectrum Disorder.