One Mother’s Experience of Her Son’s Autism Assessment

Photo by Alexander Grey on Unsplash

This guest blog post is written by Sophie (not her real name). We asked Sophie to write a piece for the AG blog sharing her experience of her son’s autism assessment. Thank you to Sophie for sharing this story. We hope you enjoy the post.

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“So do you know why you’re here today, Jake?”

That is what I remember the lovely lady saying, the one who did Jake’s initial assessment. To which he replied with a beaming smile, “No!”

I felt that sense of resigned exasperation, combined with the burning shame that the lovely lady was now thinking what a terrible mother I was to have not prepared my child for this properly. What a waste of time it was sending supportive leaflets to a parent like me. Yet this was despite weeks of careful introduction to the idea of having an assessment for autism; from spontaneous car-journey talks about how we feel in different situations, to sit-downs around the table discussing what the term autism meant.

Obviously, all my efforts had been for nothing. 

Being the parent of a neurodivergent child involves many such occasions and that feeling of being “damned if you do and damned if you don’t”. Despite this appointment being one of the most critical meetings I had attended with my child, I felt I had already failed at the first hurdle by appearing not to have prepared him properly.

Let’s not pretend that those diagnosis meetings are not important and are not hard to come by. Even if you have managed to make it feel like a walk in the park for your child, you’ve spent the last few years, months and weeks building up to this moment. First, feeling guilty about your suspicions and then the nods from other people. The evidence building. The frequent behaviour and emotional issues that have been lived through to this point, often regularly raked up to build that evidence for various agencies. The doubts. The second-guessing about certain behaviours. The conversations in your head about what you will say.  The meetings you have had with the doctors, the teachers, CAMHS, the people at Autism Guernsey and now the autism specialist.

And it’s started off in this disappointing way.

Jake is very dyslexic and has short-term memory issues, so my first thought was that he had obviously forgotten everything we had discussed. The leaflets, I knew he would not have read, despite him having picked it up and wafted it around the way teenagers do in a vain attempt to look engaged. But really? Nothing? Nothing in the old memory bank?  

So, my next assumption was that, in an awkward social situation like this, the easiest reply would naturally be “No”. A “Yes” would have led to more questions and then explaining something complicated to a complete stranger. Saying “No” meant she’d have to do all the talking and explaining. It still threw me under the bus, though.

It did not matter how I felt at that moment; I am a big girl, I roll with the punches. The fact is, I knew even if no one else did, that I had sat down with Jake and gently explained why we were embarking on this process. And I had given him the option of opting out because of being:

Dyslexic,

The one with the speech impediment,

The one who said repetitive words to get comic validation in class,

The youngest in the class,

The one who had the accident,

The one who doesn’t do sleepovers,

The one who gets extra time in exams…

Did he now want this new title to add to the other labels he had already acquired?

As a young child Jake had that wonderful lack of self-awareness, it generally freed him from being overly concerned by the difficulties that he had faced. And he had faced them. Jake has given me breathtaking pride by the way he has always taken things in his stride. But now, in his teens, that fairy-tale armour had disappeared, replaced by a secondary school uniform and hurtful remarks from children he had not grown up with. Children with their own problems, ones they seemed keen to pass on to someone “different”.

I tried to explain that getting this diagnosis would mean more help, ways to deal with the things he found difficult. It would allow others to be more accommodating and give him a chance to do things in a way that worked for him. I was not expecting a big thank you or grateful outburst, but the response I got did stay with me.

It was a rare look in the face and a very resigned, “Okay then. But I just don’t want to be different.” 

He will not wear a sunflower lanyard, but he does accept that he struggles with different social interactions. 

Like he says, he is not different, he can just do some things better and worse than other people.

And that’s just like everyone else.