I have a wonderful 15 year old son. Concerns were first raised by health visitor, he struggled at primary school, and absolutely couldn't cope at High school, it was an awful, traumatic experience and he was excluded when he was 14. He is currently being schooled online. He has had run in with the police, he's been in a few physical fights, and broken a window when in a meltdown. He was given a social worker because of his offending behaviour. Every professional he had contact with all thought he was autistic, and he was finally referred to the NHS NDAS team , after a referral to CAMHS was refused as they thought NDAS was the correct service.We were told that it was at least a 3 year waiting list, so we saved and had a private consultation. This was very thorough and professional, and they concluded he was both autistic and ADHD. We were also then offered an NDAS appointment (s) and attended them. The NDAS team then refused to give him a diagnosis, saying CAMHS were the best option for him! The NDAS report didn't even seem to be about my son, the profile they gave him was unrecognisable, he was not given a diagnosis because he laughed at a joke and looked at the clock after the assessor did. They said he had a good social understanding and had a good circle of friends. My son has never had or managed to keep a friend, he is very lonely. They also said he shows no rigid behaviours, despite being told my son has watched the same TV series every single night for the past three years, nothing else, he cannot sleep until he has watched the episode. I am now finding that social work and education are not as supportive as they were prior to the NHS non diagnosis. They are returning to the "naughty child" judgement we have fought long and hard to displace. I contacted the private assessment team again, they had a special team meeting, asked an independent psychologist to audit their report, and they concluded that they absolutely stand 100% by their diagnosis. My son struggles so hard each day, he us incredibly bright and well spoken, but cannot understand social situations at all, cannot recognise his own emotions, cannot form any sort of relationships with people his own age, is extremely anxious and has terrible moods and disregulation. Can anybody suggest anything we can do? The dismissal by the NHS has been devastating to him, he's even more confused and frustrated. His GP who knows him well is appalled by the non diagnosis. How do I help him emotionally? And practically, how do I stand in making social services and education accept the private diagnosis. It's so very isolating, I worry for his future, he's really down, and I keep telling the professionals involved with him, but they're now saying it's just his way of exerting control and basically we have "spolit" him by making adjustments for him. We are being told that we should, apparently, take back control, and make him go to a restaurant of our choosing, ignore the fact he's incredibly uncomfortable and anxious and would never eat anything on the menu, and if he has a meltdown ( they say tantrum) we should impose a consequence such as removing his XBOX or mobile phone. This goes against every instinct I have as a parent . I can understand encourage and support him to try new things, but this feels like he is being punished for being autistic. I apologise for the rant, I'm so tired of fighting for my son, he's been let down by education, social work, NHS. It's exhausting and overwhelming for all of us, and have been told he will not be able to access any of the very scant support available in our area as he doesn't have a diagnosis, but he does have a fully NICE compliant diagnosis, but not NHS. If anyone has any advice, I would be so grateful to hear it, thank you for taking he time to read this.
