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Worried ASD Assessment gone wrong

Catlady31

Hello everyone,  Sorry for the long post, this is my first post.

My 19 year old son has just had his first appointment in the assessment process.  This was with a Community Nurse at the NHS Adult Autism Service.  It comprised of me filling in a developmemtal questionnaire and he had to fill in a AQ (autism questionnaire) of 50 questions prior to being seen.  I was quite thorough on the form and she commented that that they don't usually get alot of information from people on them so the interview wasn't going to be as long as the normal 1.5 hours.

Basically, she just picked up a few questions on the form and asked my son again ie:  did he find loud noises difficult to handle and he just replied yes, handryers.  She also asked him about school to which he replied he found socialising and talking to people hard as he didn't know what to say. She also mentioned clothing sensitivities as he had alot of these when younger - she just repeated a couple I mentioned and he said he doesn't like jeans and pointed to his jogging bottoms saying he wears jogging bottoms.  She also asked about friends to which he mentioned a couple he had at school and gaming friends he explained he met online.  He didn't expand and she then asked if he went out places with anyone and he said no.  He didn't really give any indepth answers so I felt like he wasn't explaining what I see and the struggles he has everyday and how it affects him. He does struggle with language processing so it looked like he was not very bothered.  I'm now worried that they haven't got an acurate picture.

He also sat still the entire time.  He had a bottle of pop with him which he held onto for a bit the put aside.  He also had a mask on so they couldn't see his whole face.  He isn't usually good with eye contact and I had documented this in the questionnaire - she asked him about this and he just said he didn't like it and that was all.  I could see that he was looking at her when she was talking and when he was talking but his eyes moved quite rapidly when doing so.  He didn't display any restlessness or repetative movements or anything out of the ordinary.

At home, he makes noises and pulls a face at random times, usually when excited, he gets excited about small stuff others would not such as when he knows he's going to play cricket the next day and he's looking forward to it or if he's even just getting a takeaway delivered for his tea.  He also can't transition from activities, coming off gaming consoles he has to continue doing something, usually throwing a ball up into the air repeatedly or along carpet, hitting skirting.  He is also oblivious to others watching TV and walks in room standing in front it.  He doesn't get sarcasm, use chit chat or reciprocate in conversations.  He will not think to say goodbye to visitor's or even stand up and see them out the house.  He needs prompting when out in social situations.  How do I explanation this as there were no questions about these things?  I also can't give them is a special interest he has unless you count gaming and cricket - these are the only things he wants to do.  And his dad got him playing cricket from a young age because he played for a team so it isn't an interest he has came up with himself.  

I believe he is on the spectrum but I'm worried they aren't going to see it like I do.  The next assessment I've been told is about his childhood, by an Occupational Therapist.  Can anyone give me any support and advice on how to let them see his difficulties. He has struggled his whole life fitting in socially and we have had a terrible time over the years with everything.

Thank you.

Parents

  • Try not to worry too much. It’s not unusual for someone to mask during such meetings. What I will say is, when they ask questions, they are looking at responses as well as what is being said. An overly long and detailed answer is as telling as a one word answer, and anyone who knows what they are doing would see this. 
    Why don’t you prepare a list of things that your son does now that they can read after meeting with him at the next appointment? Make notes on things in his childhood. They don’t have to be ASD related. 

    With reference to a special interest, it could be anything, and could have come from anywhere. A parent, a TV show. A book…. Don’t worry about it. If I said mine include horror, card making or jewellery making you wouldn’t think anything of it because they seem normal and you don’t know the specifics.

    Make them aware how much time your son dedicates to these interests, and for how many years. Specify that he’s interested in nothing else, and how his focus cannot be shifted when he’s fixated on them.

    These children need us to be their voice to help get the true story story across. Everything you’ve said in your message makes his position very clear.

Reply

  • Try not to worry too much. It’s not unusual for someone to mask during such meetings. What I will say is, when they ask questions, they are looking at responses as well as what is being said. An overly long and detailed answer is as telling as a one word answer, and anyone who knows what they are doing would see this. 
    Why don’t you prepare a list of things that your son does now that they can read after meeting with him at the next appointment? Make notes on things in his childhood. They don’t have to be ASD related. 

    With reference to a special interest, it could be anything, and could have come from anywhere. A parent, a TV show. A book…. Don’t worry about it. If I said mine include horror, card making or jewellery making you wouldn’t think anything of it because they seem normal and you don’t know the specifics.

    Make them aware how much time your son dedicates to these interests, and for how many years. Specify that he’s interested in nothing else, and how his focus cannot be shifted when he’s fixated on them.

    These children need us to be their voice to help get the true story story across. Everything you’ve said in your message makes his position very clear.

Children
  • in reply to Catlover

    Thank you Catlover,  what you have said has helped me a great deal.

    His Cricket is very much a special interest but my thinking was that as he picked it up from his dad when he was very young, that it may not be counted. I think I need to tell them that he counts down the days to the season and will get more and more excited about playing, so much so he will make odd noises and faces.  He also gets so disappointed if it's been called off.  He also keeps track on the local leagues and finds out about famous players and watches clips on YouTube and on TV alot.

    He is also an avid gamer, to the point of being addicted I would say. I am a bit worried about telling them this as I don't want them to think I just let him do what he wants in the house but it's not as easy as that because he doesn't socialise and his only friends are on there - so I'm  guessing he finds messaging and gaming a lot easier to deal with.

    I already have alot written down regarding his difficulties as I find it difficult myself to verbally explain things.  

    Do you know what the second appointment entails by any chance?  I find it hard to believe it only takes 3 hours in total.

    Thank you so much for your help.