ASD assessment

Hi, my son who is 12 has been on the autism waiting list for 20 months. I attended the first part of the assessment yesterday which took about 2 and a half hours and was pages of questions based on my son's development from birth. It was very difficult to remember so far back and I found that the clinician dismissed some of my concerns for example sensory issues with sounds- hearing very quiet noises that I can't hear, he said this was normal up until the age of 16. Also my son walks on his toes and he said this could mean a number of things doesn't mean he is autistic. My son is very rigid with foods he eats and routines and he said this could be due to his anxiety. Also said some of his traits could be linked to his  tourettes. Clinician said he was reluctant to give a diagnosis and didn't like to put labels on people if it wasn't going to benefit him. My son goes for his ados assessment on Tuesday and I will get the results of both assesments then. I am w I am worried I will be told he only has traits of autism and not get the help that he needs. Anyone else had the same experience

Parents
  • Hi my son is 7 and was diagnosed recently. I spoke to my son's teachers several times and they thought I was paranoid and there was nothing to worry about. However they had put him on the SEN register for his emotional outbursts without telling. It wasn't until I voiced my concerns to new SENCo that I was taking a little more seriously. I sat with her for two hours filling out forms about is development and emotional state which were forwarded to CAMHs. It took us months to get an appointment to come through for his assessment. In the mean time, I had voice more concerns to the school SENCo who referred him to communication and interaction. Someone came in and spoke to him but if it wasn't for be working at the school I would have known nothing about it until the report was sent home two weeks later. Things were getting worse at home and I had to email CAMHs to voice my growing concerns. in the end they moved his assessment date forward. The assessment itself wasn't quite what I expected it to be like.  We sat with the consultant for about an hour and half talking about our concerns and the things we had noticed which had led us to believe that he might have ASD. The whole way through the assessment I wasn't convinced that she believed a word we were saying. That was until we showed her a video of his rocking, flapping and jumping. But still at the end she wouldn't give us an answer. She needed to speak to his teacher and the SENCo as their answers on the form were completely different to ours. I felt everything was quite rushed during the assessment. It didn't help that I found out a few days later that the consultant was leaving CAMHs. I tried speaking to the SENCo but just said there is a fine line between anxiety and autism, which as you can imagine wasn't helpful. By the end of the week, the CAMHs consultant got back to me really late at night with a rushed phone call telling me that she believed he was autistic, that she would send me copies of the letters she was sending to his school and doctors and I should get a DLA form. She ended it by telling me he had been discharged from CAMHs. It wasn't until I spoke to his teacher the next week that I found out that she believed he had a milder form of autism. Other than the letters and a photocopied version of a booklet explaining autism we have had no support since. Once again my husband and I have had to do the leg work to figure out what happens now. 

    One thing I would say is don't be surprised if you don't get any answers after his next assessment. All you can do is keep fighting for your son. Even now we have the diagnosis from CAMHs my father-in-law still doesn't believe it and I'm pretty sure some of the people from my sons school don't believe us and think we are just paranoid. Just hang in there.  

  • HI Daniel and Gonzo, thank you for your replies. My son had the second part of the assessment on Tuesday, which was the ados part. This took about 45 mins my son then came out and they had a 20 minute discussion without us and then we were called back in.  The person that did the ados assessment said that the results of the question based assessment that I had completed had shown that the result was borderline. She then went on to say that the ados assessment that she had just completed the score was very high and she had no doubt that the result was my son does have autism. She said he would be classed as having aspergers because he had no problem with speech from an early age. They are now going to pass my details onto autism Hampshire who will contact me within 6 weeks to explain about the help that will be available for my son. I think I have felt every emotion possible since getting the diagnosis.  Partly relieved that they could see what I could see. Also anger at the doctors and teachers that doubted me when I said I thought my son could be autistic and made me feel stupid for even thinking it. Even friends that have given me a funny look when I have said about my concerns. More needs to be done to educate people that it is a spectrum disorder and every child is different. I feel all that I have done these last few years is fight to get listened to. So to all those people out there that have a gut instinct that something is wrong please do not give up and keep fighting to be listened to. There is a lot to be said for a mother's or fathers intuition. I am a single parent so have had to do most of this on my own, although I do have very supportive parents, but at the end of the day it has been down to me to keep fighting for an answer. I am sure I still will have a fight to get him the support that he needs, but I will never give up.

  • I bet you feel so relieved now that someone actually took you seriously and it sounds like you are going to get some help. Keep your fingers crossed for me that perhaps i'll be able to get some help for my son too.

  • That's terrible they shouldn't just discharge you without offering any help. Maybe go to your GP or school to see if they could refer you back to CAMHS to see a different consultant

  • the consultant dealing with his case was leaving Camhs the next day and i feel she just wanted to do things quickly so she could leave. Wasn't a great experience really. They don't think they can help and told me to go online.

  • Hi Daniel, thank you for your kind words all the best to you too and hope you continue to receive the support that you need.

    HI, Gonzo, yes definitely relieved. Will keep my fingers crossed for you. Have you been back in touch with CAMHS? why did they discharge your son? They should have put you in touch with other services if they are no longer going to help.I myself havnt had a very good experience with them. I kept on and on at them with regards to the assessment and think I would still be waiting if I hadn't kept on. Keep strong and keep fighting.

Reply
  • Hi Daniel, thank you for your kind words all the best to you too and hope you continue to receive the support that you need.

    HI, Gonzo, yes definitely relieved. Will keep my fingers crossed for you. Have you been back in touch with CAMHS? why did they discharge your son? They should have put you in touch with other services if they are no longer going to help.I myself havnt had a very good experience with them. I kept on and on at them with regards to the assessment and think I would still be waiting if I hadn't kept on. Keep strong and keep fighting.

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