Worried ASD Assessment gone wrong

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
  • Hello, I understand that you are worried that your son may not be formally diagnosed as autistic, but clinicians should be aware of how all autistic people present differently. Also you say he didn’t behave as he usually would, he could have been masking if he didn’t feel safe enough. Professionals should understand masking, so hopefully that will influence the diagnosis.

    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.

    With regards to this comment, your son probably will not elaborate on answers unless explicitly asked to do so. We as autistic people are literal communicators, so unless you say what you mean you will not get the answers you are looking for. This response is typical of us as autistic people, hopefully the professional recognise this. 

    Also, the assessment shouldn’t only be reflective of  how he presents in the clinician’s room, it should take into consideration what being autistic means for him in everyday life. If the clinician understands the complexity of autistic experience then he should still receive a formal diagnosis.

     I hope this helps.

  • Hi, thank you for your reply.  Yes, my son will only answer exactly what he has been asked, he wouldn't normally elaborate unless he was then asked to do so.  I hope they understand this.  Thank you.

  • You are welcome. I hope the diagnosis process is beneficial for your son.

Reply Children
No Data