One thing that's become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.
Our family has been waiting for a CAMHS appointment since the beginning of the year. I've called up the consultant's secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It's frustrating, stressful and my son meanwhile, is not getting the help he needs.
Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn't work because he had Asperger's and as he was now in the right school, goodbye to you!
And professional support for parents? Don't get me started. My GP told me candidly that there wasn't help for anyone and that's just the way it is.
One lady who wrote to me recently said, "The two consultants in our CAMHS team told me that my son doesn't tick enough boxes to fit easily into a diagnosis but they did acknowledge that he's a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn't have another chance of an appointment with her. This was in January and then I never heard from them again."
She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. "It seems that at every step of the way we are faced with obstacles. I can't believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different."
Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.
She said, "During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn't appeal because I was so wrapped up with dealing with her pain and needs myself.
"She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.
"After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement."
After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.
Still, it's not over yet the mum says, "I just hope we do get a statement so fingers crossed, and in the meantime I'll learn all about tribunals just in case we don't!"
Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We're still waiting for the government's document, "The Way Forward" to be published, despite it being 'imminent' since February.
The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
- Exemplary Practice: Creating a positive future of meaningful work for young people with SEND - October 18, 2019
- Ofsted finds home education is most often not a choice – and off-rolling is a key culprit - October 15, 2019
- The DfE wants to stop LAs filling SEND funding gaps - October 14, 2019