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First ASD assessment | Advice on how to tell my child

Mum of 11yo | Waiting diagnosis

I have just joined this page. I hope someone can advise me.

My son has his first ASD assessment at the beginning of April and I wondered how parents/carers spoke to their children about the assessment.

He is 11 years old, low self-esteem, very communicative at home and to anyone that meets him for a few hours may not realise he has some struggles. He hates assessments, hates to be singled out and is afraid of what is being said about him. He asks that I don't tell family members about him, not even his good news and would hate to know I had to complete a 'family story' that included much of his life. He will not want to go for the assessment, and has a keen sense of injustice at being assessed and asked questions. He also won't care how easy/hard it is.

I want to build trust, so talking to him about it far enough ahead is important. However, it may end up in him refusing to go and days of ear ache and bad moods.

Any ideas on where to start with him? Thank you for reading.

Parents

  • 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.

  • in reply to NAS70596

    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.

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  • in reply to NAS70596

    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.

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