What I wish I’d known before my autism assessment
If you’re wondering whether you might be autistic, the idea of an autism assessment can be both exciting and terrifying.
Maybe you’ve spent months researching. Maybe you’ve been listening to podcasts. Maybe you’ve completed screening questionnaires. Maybe you’ve started looking back at your childhood. And eventually you reach the point where you think: I think I want to find out
Then another question appears: What actually happens during an autism assessment?
An autism assessment is about your whole story
An autism assessment isn’t simply about ticking off autistic traits.
A clinician is trying to understand how you’ve experienced the world across your life.
That can include things like:
- social communication
- relationships
- sensory experiences
- routines and predictability
- repetitive behaviours
- interests
- communication style
- emotional regulation
- masking
- how you manage everyday life
But the important part is the overall pattern.
Autism doesn’t have one presentation
This was something I had to unlearn.
I had a very specific idea of what an autistic person looked like. And because I didn’t see myself in that image, I didn’t initially think autism could explain my experiences.
But autistic people are incredibly diverse.
Someone can be highly verbal. Someone can have strong academic abilities. Someone can have a career. Someone can have relationships. Someone can appear confident. Someone can be incredibly good at social interaction.
None of those things automatically rule out autism.
Masking can make assessment complicated
This is particularly important for adults.
If you’ve spent years learning how to navigate social situations, you may have developed strategies that hide some of your difficulties.
You might know to make eye contact. You might know how to take turns in conversation. You might know the socially expected response. You might know how to appear interested. You might know how to adapt yourself depending on who you’re with.
But knowing how to perform something isn’t necessarily the same as finding it intuitive or effortless.
That’s why talking about how much effort something takes can be important.
Don’t just talk about what you can do
This was something I found really important.
If someone asks: Can you make friends?
the answer might be: Yes
But that doesn’t tell the whole story.
What happens when you’re making friends?
How do you know what to say?
How much do you think about the interaction?
How much energy does it take?
What happens afterwards?
Do you find maintaining relationships difficult?
Do you need significant recovery time?
The ability to do something isn’t necessarily the same as the experience of doing it.
Sensory experiences matter
Think about your sensory world too.
What sounds bother you?
What textures?
What smells?
What kinds of lighting?
What happens in crowded environments?
Do you seek particular sensory experiences?
Do you avoid others?
Do your sensory needs affect your work, relationships or everyday life?
Again, specifics are useful.
Instead of: I’m sensitive to noise
think: When several people are talking at once, I struggle to process what anyone is saying and become overwhelmed
That gives a much clearer picture.
Think about routines and change
Another area worth reflecting on is predictability.
How do you respond when plans change?
How do you feel when you don’t know what’s going to happen?
Do you have particular routines?
Do you become distressed when those routines are interrupted?
Do you prepare extensively before unfamiliar situations?
Do you need time to mentally adjust to changes?
These experiences can look very different from person to person.
Your interests matter too
Think about the things you’re deeply interested in.
Do you develop very intense interests?
Do you spend huge amounts of time learning about particular topics?
Do you talk about your interests differently from other people?
Do you find it difficult to shift your attention away from something you’re deeply engaged in?
Again, the point isn’t to find the correct autistic answer. It’s to describe your experience.
What about childhood?
Just like with ADHD, childhood history can be important.
Think about:
- friendships
- play
- communication
- routines
- sensory experiences
- interests
- transitions
- school
- behaviour
- social expectations
You may not remember everything. That’s okay.
Talk to family members if that’s helpful. Look at school reports. Think about stories your family has told about you.
And remember that some autistic children are very good at masking.
You don’t need to convince the clinician
This is probably the biggest thing I would want someone considering assessment to know.
You don’t need to prove that you’re autistic.
You don’t need to arrive with a perfectly organised presentation.
You don’t need to demonstrate every trait.
You don’t need to know exactly what the clinician is looking for.
Your job is to describe your experiences as honestly as you can.
Their job is to assess them.
The assessment can bring up a lot
Something I don’t think we talk about enough is how emotional assessment can be.
You’re being asked to look backwards.
At childhood. At relationships. At things you’ve struggled with. At things you’ve misunderstood. At the ways you’ve adapted.
And sometimes that brings up emotions you weren’t expecting.
Relief. Validation. Sadness. Anger. Grief. Excitement. Confusion.
Sometimes all of them at once. Whatever you feel is okay.
And then there is the possibility of an answer
For me, receiving an autism diagnosis didn’t suddenly change who I was. I was still me. But I had a new framework for understanding myself.
Things that had felt disconnected started fitting together. And that was powerful.
Not because a diagnosis explained absolutely everything. But because it explained enough for me to stop assuming that every difficulty was a personal failure.
If you’re considering an autism assessment
Take your time.
Learn about autism from a range of reliable sources. Think about your childhood. Write down examples. Notice patterns. Think about masking.
Consider what your experiences actually cost you in terms of energy. And find an appropriately qualified clinician who has experience assessing adults.
You don’t need to have everything figured out before you begin.
🎧 Listen to Episode 12
This post accompanies Episode 12 of the That AuDHD Teacher podcast, where I talk about autism assessment, what I experienced, what surprised me and what I wish I’d known before going through the process.
If you’re considering an autism assessment yourself, I hope hearing about the process makes it feel a little less unknown.
Leave a comment