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16 year old son - struggling to get seen for diagnosis

linz19832

Hi am Lindsey

I have been trying to get my son seen for years about what I and now school think he has Aspergers.  CAn anyone give me any advice.

He was seen by speech theraoy for 7 years all the way through primary school

Through the years when I have asked for help with him, it always got put down to my parenting and to go through the Triple P programme

Moved area and got seen by someone in Glasgow who wanted us to attend a group on a Wednesday night with other parents and kids who were involved with the police(i did not attend as my son is not that way inclined, he is a very quiet shy individual who does not break the law, he was lashing out at me no one else at the time)

He is very much most comfortable in his room, curtains closed lights on regardless of time of day on his computer, very sociable online but no real friends in the outside world.

He needs prompted and encouraged with all personal care, prompted to eat, (diet is very rubbish, not alot of selections for him)

He is very capable of doing school work however doesnt bother to. He is failing his highers and nat 5s he is sitting this year.

He wont give me permission to talk to doctor on his behalf as he is now 16.

Sorry I am going on a bit but can anyone give me a bit of advice as I currently dont know where else to turn.

thanks

  • in reply to NAS72067

    Hello

    What your doctor said does not sound right to me. Your doctor can and should make this referral if requested. When your child is assessed they will ask for a report from the school. I believe that before a child is 18 the referral would go through a paediatrician. I have found the NHS too slow. They behave like gatekeepers instead of providers or enablers.

    When I was desperately trying to work out what my daughter was struggling with I initially contacted Great Ormond Street Hospital where they have a private clinic called 'Mind & Body'. A while earlier one of my daughter's support workers at school said that they thought my daughter might have Tourette Syndrome so I initially had her assessed for that. It was those clinicians that diagnosed her formally with anxiety disorder and OCD. They were the ones that said that they thought that she might have autism. No one had ever suggested this to us before even though she was in a school with an autism hub and had had numerous referrals and interactions with mental health workers about her anxiety and OCD? I had not considered it as a possibility as I simply did not know enough about ASD or how it presented differently in girls. The profile of one of 'Mind & Body's" Consultant Child and Adolescent Psychiatrists looked like the kind of autism specialist that I wanted to talk to. I thought that if I was going to pay I would make sure that I got the best, not try to do it on the cheap! This was something that we were only going to do once. 'Mind and Body' referred me to the private clinic where the psychiatrist worked (DATS in St.Albans) so we went there. As I wrote above it was an excellent experience. The consultant clinical psychologist who actually assessed my daughter was very impressive. It cost £2,200 including an assessment for ADHD. I have read many times that the NHS and schools do not accept private diagnosis. I have not found this to be the case but perhaps it depends upon the service/clinic that you use. If you want more contact details and names I am happy to provide them. Good luck. 

  • in reply to FSCR

    Hello I am new here. I think my daughter has ASD and went to the Doctors who told me that she cannot make a referral as my daughter is only 15 and it has to come from the school. How did you find a private test? I have tried to google it but that doesn't feel right as you cannot tell what the quality will be like. Thank you.

  • Hi Lindsey,

    I feel your pain. We had similar difficulties in getting our son assessed. We finally got him assessed aged 16. Have you managed to get him on the pathway yet? If not speak to school and get them to start the referral off. If you are thinking about going down the private diagnosis route, check with the education setting he's in now and moving on to as they don't always accept a private diagnosis.

    I would also look to local autism groups (We're lucky in Berkshire that we have an amazing group called Autism Berkshire), they can be very helpful as they know the way the system works in your area. Facebook is my best friend when it comes to getting help, support and a shoulder to cry on. Especially at the moment with lockdowns.

    Never give up hope on getting the answers you so rightly deserve, they will come. Unfortunately we have to fight far to hard to get them.

    You're doing a fab job, all the best

  • Hello Lindsey

    This sounds awful. i am so sorry. Would you consider a Private Diagnosis? I did this with my 17 year-old daughter as I was told that the waiting time for an NHS assessment could be two years. We were not prepared to wait as her mental health had got very bad. It was expensive but worth every penny. This assessment and report was excellent, and a good experience for my daughter. She was listened to thoroughly and sensitively. It has been accepted by the NHS and she is now about to see a psychiatrist and on another waiting list for 1-1 therapy/counselling. It has also meant that her Sixth Form College has put special support in place. She has a Learning Support Assistant and a mentor. She struggles to be in the educational environment but is academically able. The only problem is that your son does have to be willing to be assessed.

    Good luck LIndsey

    F