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Son's autism assessment

K17

Hello

I was just hoping to get some advice. My son is 11 and has an autism assessment next week. I tried talking to him about it but he is very upset and angry and although I'm trying to reassure and say the right things, I seem to be getting it wrong. He does not find it easy to talk about his feelings or engage when he's upset so it's hard to have a proper conversation. He seems to view it as a negative thing. I really don't know whether he will get the diagnosis or not which in a way makes it harder. I went to the school a few years ago with concerns I had about him such as hating clothes, sensory issues, not going to the toilet at school, struggling with changes and emotions and they started the process. He presents as quiet and shy but not stereotypically autistic. School hadn't noticed anything so I feel I'm the only one who notices. My husband isn't supportive. Hates labels and feels I've upset a happy child and potentially ruined his future when all I want is to support him to have the best life possible as the person he is. He starts secondary school next year and I worry the issues he has may become more problematic. I would appreciate any support or advice in how to help him through the assessment and not see it as so negative. I apologise if I've said or done anything wrong. I'm happy to be educated and hear advice. All I want is the best for my son but I feel so alone and unsupported with this and hate to thing I've done something to cause him to be so unhappy.

  • in reply to K17

    Yeah he just needs to be himself, there's nothing more to it. They have different assessments based on age/talking ability (i.e. if some is non verbal), so he'll be fine. The more just himself he is, the better. 

    If he doesn't engage, it might be tricky, maybe line up a reward for doing it? 

    My son's one is on in between his school carol singing concerts, before and after. :( It's not ideal as we have to get him after the afternoon performance, to it, then grab a takeaway and back to school for evening performance. He'll be knackered, but we've been waiting so long we can't put it off. 

  • in reply to K17

    Don't assume they won't be able to see it, assuming he doesn't just point blank refuse to talk. It is about what you say, what you don't say, and how you say it.

    For example they may ask a question, the actual answer doesn't matter. It is how you interpret the question, what detail you put in the answer, how you phrase it etc. This is harder to hide and to convincingly fake.

    There are patterns and subtle clues.

  • Thank you all for the support and advice. It is appreciated. I think a main concern is that although I've already given lots of information they won't 'see' anything when they meet him so he won't get a diagnosis. So either he genuinely doesn't have a diagnosis of autism or he does but they won't see the things I see which will lead him to struggle more in life unnecessarily. Whether he has a diagnosis or not there are still things I worry that will impact his future. But overall it's hard that this seems like it will be difficult for him and he sees it as a negative.

  • Hi K17

    Welcome to the Online Community.

    It is completely understandable to feel worried and alone in this situation. Many parents share similar feelings before an autism assessment, so you’re not doing anything wrong by and you're not alone. It might help to read over our guidance here: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis
    It's good to think ahead about secondary school now as understanding his needs now can make that transition smoother.
    Here’s a link to our education information which you may find helpful: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis
    Kind regards
    Sharon Mod

  • Tell him that he doesn't have to tell anyone the result. But knowing is secret information that can make his life easier. It is better to know now than at 40 or 50 and find out life didn't need to be so hard. It is not a negative thing, just a difference, but it requires some knowledge to understand.

    He might even find he can do some things better once he knows and accepts it. I would have liked to have known a lot earlier but I was also too prejudiced (and times were different).

    Knowledge is power. It can make learning and dealing with people easier. It can help avoid burnout, which is really not nice. The confusion that will come later by not knowing is not going to be helpful.

    And if course the result may be negative, in which case he will know and there is nothing to worry about.

  • I'm in a very similar position, in that I have an 11 year old son going for an assessment next week and going to high school next year.

    My son has had big issues with school though and his teachers are the ones that presented it to me so our situations do differ there (sounds more like his younger sister who is also having issues but is the quiet type who is more likely to fly under the radar too).

    Presenting it to him, I emphasised that we are hopefully going to get him more support to make life easier for him. If he gets it, it should also mean an enhanced transition to high school (you should check this out if it becomes relevant). I believe the high school have support he'll be able to access, like a quiet room, so it will hopefully mean a better experience at High School (as high school is hard for autistic people as that's when social challenges become more apparent.)

    I also this summer I realised that he got it from me, and I pursued a diagnosis privately which I got last week, (jumping the family queue so to speak)  but so I can show him that it's not a bad thing.  If there are any family members he can look up to with even a few similar traits, I think it can make it feel more real and less a scary word. 

    Profdanger's suggestion of finding famous autistic people could also make it look not so bad. My son watched The Traitors, so it was really nice to have Cat Burns openly say she is autistic as it normalises it. 

  • Good morning from America!

    K17 said:
    I apologise if I've said or done anything wrong. I'm happy to be educated and hear advice.

    You haven’t said anything wrong! In fact, it appears you really care about the Autistic community.

    This is a very hard case, since it is tricky to convince someone that views Autism as a negative thing that it’s not all doom and gloom. His future isn’t damned if he gets the diagnosis. My go-to advice for situations like this is to emphasize that there are loads of Autistic adults that function well in society in their own ways. I have a job, a wife, and kids, which according to the leaders of my country should be impossible for me. Anthony Hopkins, who is a celebrated actor and musician, is Autistic. There’s even the potential that great minds of our past such as Albert Einstein and Wolfgang Mozart also had Autism. It’s not a death sentence if your son gets the diagnosis. It just means that you may have some answers as to how to make your son more comfortable and successful in a world not designed for him.

    To put things into perspective: I also had sensory issues, struggles with changes, and I wouldn’t use the restroom at school when I was his age. I also grew up to work as a professor of music for ten years.

    I hope that helps!