First ASD assessment | Advice on how to tell my child

Glad to hear that it went more or less well for you!

I thought I would update you. Today my son went in for his first of two assessments. He went willingly with the knowledge that he'd get a couple of Xbox games as a treat after. It wasn't distressing for him, but he does have some questions. Someone mentioned to me as he was going that the results would go to the doctor. This is the first time a doctor has been mentioned. I am choosing my words to him carefully so he can understand that it's the system that means doctors are involved but nothing is actually wrong with him, he's perfectly fine. These little moments are challenging.

I'm so glad to hear that! Hope everything goes well for you

Yes. That sounds like a good idea. Thank you for this support. I am sure I will be back here as my week unfolds for more advice.

It might be worth explaining that the assessment isn't just for his teachers and parents. Its for faceless bureaucrats who have far more power over his life than they ought to. Explain that if he passes the assessment their may be additional choices in his schooling and if there are you will include him in making those choices.

You may want to point out that you don't think HE needs an assessment, but that there are tools available for people who have gone through an assessment. Talk to him about why you want him to have access to those tools. Since you are planning to honor his decision about whether or not to get an assessment, make that clear to him: "We're not going to make you go, if that's your decision, but here is why you might want to..."

We told our son about the assessment yesterday and now he refuses to go and we can't actually make him at 11 years old. We haven't talked to him about ASD as I did think this may be too much at this stage where we don't have a diagnosis. He feels really hurt that I think he needs any kind of assessment, he says he understands himself and why can't everyone else (the teachers and I) just listen to his voice instead of experts who may only meet him for an hour (fair point). At this stage I think we're going to have to bail on the appointment having worked for years to get here.

Bought the book and have read half of it this morning. Thank you. Books like these always give me a renewed sense of 'we can do this'. Thanks

Will try to find a role model. I don't think he rates anyone I can think of like Greta Thunberg. I'm trying to find out if the YouTubers he follows have ASD but can't find anything out. Will keep looking! Thank you

This is helpful. We are starting to talk to him today/tomorrow to give him a week leading up to his assessment appointment number one. I think he'll be mostly angry but at least it'll give him time to process what will happen. Essentially he wants to be left alone and in some respects I would prefer that too. I don't think the school would be able to do that though and just let him get on with what he's happy with.

This is really helpful and gives me some food for thought. Thank you.

I'm guessing every time he is assessed his life changes in ways he can't control. People treat him differently. He gets excluded from some things or maybe forced to do others. I think the key thing is to find a way he can have a sense of agency and control in the situation.

Hi I was reading your post and can really identify with what you are worried about! I hope our experience might help a bit. Our son was almost 7 when he went for his assessment, so obviously a different stage but some of the issues sound very similar.

He was ultimately diagnosed with Aspergers (he is 8 now). My son also likes to know exactly what is happening and to talk through anything unfamiliar. We found talking it through beforehand really helped him. We went through exactly what would happen. We will take you in the car, we were going to this building (and showed him a photo) then we will meet a SALT who will go through a story with you and ask questions (we did A-DOS). I still find that helps with any unfamiliar journey or experience.

We couched it in terms that everyone is different and everyone has things they are good at and things they find hard. Everyone deserves help. I started talking about how amazing his brain was and the way it worked, but sometimes he found things hard and so this was to help him. It sounds like your son is very private and it will be important that he has a sense of psychological safety. I think  it might be very important to him to make sure he knows no-one else will know unless he agrees. So hopefully he feels more in control of the situation Then as time goes on, and if he ends up having a diagnosis you might address telling people that would be useful to know like school etc.

This conversation happened over weeks for us. Little and often was best.

Good luck, I hope it all goes well for you.

Can you try to phrase it in a positive way? You could mention some things that he's unusually good at and say that you/his teachers think he is likely to have a similar kind of brain as [insert name of suitable ASD role model]. Finding out that Greta Thunberg, Bill Gates, maybe Jane Austen, Guy Martin etc are/were on the spectrum helped me think about it more as a positive thing. 

Also, try not to make it a big deal, tell him that he's still the same person no matter what the professionals say. I used to get upset when adults acted all 'concerned' so it might be best to avoid that.

Hi there,

I'm afraid I can't be of too much help here but I can recommend a book by a specialist in the field: Luke Beardon. His book 'Autism and Asperger Syndrome in Childhood: For parents and carers of the newly diagnosed' would be appropriate here and it may help you understand your son more. I do hope that it can help you navigate your way through this process. 

If you do decide to read this book, you could then broach some of these issues with your son and start to build trust that way, by showing that you are making efforts to understand him.