Autism Assessment for Adults - the Emotional Impact

Now that I’ve processed my autism assessment report, I feel upset about it

Three Years On

In a few months, it will be three years since I got my autism assessment results.

I’ve previously written about the assessment process itself, but that post was mostly factual. This time, I want to focus on how it felt, and what impact it has had on me from an emotional point of view.

Before being assessed, I’d heard that some people can find the process to be quite difficult emotionally — almost traumatic.

At first, I couldn’t really understand why, because the assessment process sounded fairly straightforward: just fill in a questionnaire, go and chat to a clinical psychologist a few times, then put them in touch with anyone who knew you as a child.

I had to do some rather bizarre things during some of the sessions, like describing the pictures in a children’s storybook, and making up stories using props such as string and paper clips. Occasionally, it felt like I was on a hidden camera show — as though there were people in a secret room somewhere, watching me and laughing as I made a fool of myself. Despite that, it wasn’t too taxing.

Then the final report arrived, and my opinion changed dramatically!

Photo taken by the author.

A Rant About the Report

It took me by surprise when I saw just how critical the report was of me. It was like a personal attack, except that I couldn’t respond or defend myself. Having a write-up of all the difficulties that I’d described to the assessor, where the various aspects of our interactions were categorised and criticised, made me feel like they viewed me as almost sub-human or worthless.

There was a condescending and patronising tone to some parts of the report, such as where it listed tips on how to communicate with me. It’s hard to pinpoint, but it felt like there’s an underlying implication that I have limited intelligence, and limited understanding or knowledge about the more subtle, emotional and non-technical aspects of life.

In a couple of places, it mentioned that I’ve only had a limited number of romantic relationships — as though two good long-term relationships has a lot less value than, say, multiple failed relationships.

Ultimately, their understanding of me seemed rather crude and simplistic, as though they saw no depth to my personality. The report gave a strong impression that the neurotypical way is the right way, and the autistic way is the wrong way. It seemed like they were just trying to fit me into the various sections of a template.

It left me wondering how people really perceive me, and how many people truly understand me. It made me wonder if I’m really as bad as they seem to think; was it a case of ‘the truth hurts’ perhaps? Maybe I’m just reluctant to acknowledge some of the very difficulties that prompted me to seek the assessment in the first place.

It’s awful to think that the report is effectively an official record of what the NHS thinks of me — like a statement of my value as a human being.

In some ways, I’m surprised it didn’t destroy me.

Coming to Terms With the Report

After the initial shock of reading the report, I put it to one side, to give myself plenty of time to process it in my mind. Now that many months have passed, I feel more able to talk about it.

To be blunt, I think that the assessment process is, in some ways, ludicrous and harrowing.

When a person in their forties is asked to do activities clearly designed for young children, it just feels like they’ve not given it much thought. Even if it’s a technically valid approach for adults, surely some adaptations could be made?

Then, to receive a damning report about your life, written by someone relatively young, was very hurtful.

I understand that they need to express their opinions, and make a decision about whether someone is autistic. But in my case, although many of the points in the report are true, and other points may have some truth to them, I think it could have been phrased better, without being quite so tactless, personal and patronising.

Ultimately, the assessment process was like a game that I had to play, to get the diagnosis I was seeking, in the hope that it would explain some of the difficulties I’ve experienced over the years. But it came at quite a cost.

Now, about 30 months on, I keep thinking about the report, and how misunderstood and wronged I feel.

The following sections contain a taste of some of the things that troubled me; writing them down here makes them seem fairly minor now…

I’m Too Talkative

The report said that I talked too much, included too much irrelevant detail, and that sometimes they had felt uncomfortable.

That upset me — I didn’t like the idea that I’d made the psychologist feel uncomfortable, whilst I was opening up and talking about my personal life.

During the sessions, I was aware that I tended to go off at a tangent, and talk about other somewhat-related subjects when I felt it was relevant, or if I remembered something important that I’d left out when answering a previous question.

However, I think I was generally self-aware enough to know I was doing it, and would mention it, apologise and offer to get back to the main question — but the assessor would usually encourage me to continue off-topic!

Ultimately, it made me feel deceived, like she’d been two-faced, by being pleasant and encouraging me to continue, whilst saving her criticism of me for the final report.

I’m Not Good at Reciprocal Conversations

The report said conversations with me are not very reciprocal, and that I would occasionally interrupt the assessor and insist on getting my point across. It also said I failed to respond to the assessor’s comments.

My immediate reaction was: how would she know what a conversation with me is like?
I didn’t think I was there to have a normal conversation. I was there to give detailed answers to their questions, so surely it would be desirable for me to talk more than the assessor, if they were to find anything out about me.

Ironically, in normal conversation, I do try to be aware of give and take. In fact, I usually find that I’m the one who can’t get a word in edgeways. Neurotypical people often seem to be the worst offenders in this respect. If I talk about topics that do not interest them, I’m lucky to say two sentences before they take over, and talk for 15 minutes about their stories. Out of politeness, I will listen and try to show an interest. How is that reciprocal?

Ultimately, I think that most people like to talk more than listen.
At work years ago, lots of people used to come into my office and tell me their problems; I joked that I was like the ship’s counsellor on Star Trek. But the truth was that I enjoyed feeling valued as a source of support. Remembering those days reassures me that I must have some skills at listening and showing understanding. If only I’d realised I was supposed to be in ‘normal conversation mode’, rather than ‘business meeting mode’...

I Don’t Know What a Romantic Relationship Is

I was shocked that the report stated that I don’t understand what a romantic relationship is. It said that I thought it involved a practical element, such as having someone to wait at home for a parcel delivery!

That wasn’t what I thought at all!

As someone who can be very ‘touchy feely’, and who cares deeply about people, it really hurt me to read that.

I’d had a wonderful relationship for 21 years with my late wife. Also, at that point, I’d been in a fantastic new relationship for nearly four years too. Considering those things, and being about twice the age of the assessor, I felt like I had a reasonable amount of experience to draw upon.

Before the assessment, I’d never thought about the definition of a romantic relationship; I think it’s one of those things that most people ‘just know’.

So what went wrong?

Not being able to recite the definition, or know the key words and phrases they were looking for, meant that I had to think out loud.

That resulted in my description being somewhat meandering, as I tried to think about the various aspects of relationships. I was trying to set the scene, to paint a background picture of love, unquestioning trust, and ‘being one’ with someone else on every level.

Sometimes, my sense of humour can be rather unusual, especially when I feel pressured — it’s probably my way of diverting attention. I foolishly threw in a line about having someone to wait in for a parcel for you, whilst describing the idea of sharing your whole life with someone, where you’ll both do anything for the other person. Evidently, the assessor completely misunderstood me, and noted down my remarks.

It may also have been one of the times when I realised that I’d talked for too long, and stopped without ever really getting to the heart of the matter.

Whatever the reason, it was certainly a shock to see it in the report!

Minor Errors / Ignorance

The report said I sometimes quote lines from old TV sitcoms like “Sinfelt” (?!)

I can’t believe the assessor did not know a show as popular as Seinfeld well enough to spell it correctly! The report also misquoted a line from the show that I had given as an example, demonstrating the assessor’s lack of attention to detail.

I started wondering: is it really so unusual to use one or two amusing phrases from whatever popular TV show you happen to have watched recently, from time to time? (It wasn't even something I'd done during the assessment — my fiancee had mentioned it to the assessor.)

There were several other areas containing factual errors, or just plain ignorance, such as referring to my job developing software as ‘designing computer codes’.

Showing My Worst Traits

I think some of the unkind comments that the report made about me might be because, during the assessment, in the back of my mind, I was always concerned that they would say I was not autistic. And that would have meant that I would have no explanation for the difficulties I’ve had all my life.

So I made a conscious effort not to hold back from showing my ‘worst traits’.

I would talk excessively, and bring up every moment of my life when things had gone wrong. It was quite a depressing thing to do really! And judging by the report, perhaps I went a bit over-the-top…

Final Thoughts

I tend to have a habit of overreacting to things, and as time goes by, the issues I have with the report bother me less and less.

Despite my reaction to the report, I’m still glad I went through the autism assessment process — it really is useful to know for sure.

I hope that I’ve not put you off from being assessed, and that you will have a better experience than I did — or at least be better prepared.

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The NHS Autism Assessment for Adults in the UK — My Experience