In my previous post I talked about embarking on a new journey to get our daughter diagnosed. Girls with ADHD and / or Autism are under diagnosed. Typically, girls on the spectrum are less disruptive, keep up better academically and are able to mask symptoms better than their male peers. Despite this we were optimistic that the journey would be smoother than with George and they would be able to assess her with an open mind.
Before her first appointment at CAMHS it has been brought to my attention there are plans in our area and neighbouring boroughs to tackle the crisis in funding for child mental health issues. Services are struggling with long waiting lists and many referrals for ASD assessments. They have outlined a new pathway for these children, this involves removing access to an ASD assessment and diagnosis altogether. The children will be left for schools to somehow find the funds to meet their needs, this will remove the need for a formal diagnosis according to the trust. They also claim they would liaise with other services to provide support, whilst they may be able to do this locally many of the things families rely on are not local services so this isn’t a reasonable answer.
Yeah right, I know, I too thought it was somebody getting the wrong end of the stick and this couldn’t possibly be a seriously considered option. Sadly, having looked into it further, this is exactly the option being undertaken.
Please see the relevant pages from the trust’s minutes of meeting detailing the planned cutbacks (CCG Minutes).
I have posted before about how important a diagnosis was for us here. Let’s have a closer look at the services available without a diagnosis.
School placements at specialist schools or autism bases within mainstream schools require a formal autism diagnosis.
Autism services brought into schools to advise on individual interventions for pupils with autism require a formal diagnosis of autism.
EHCP – Very hard to get even with a diagnosis, the chance of getting one without the backing of professionals and detailed reports will greatly reduce the chance of getting this extra help, putting the safety of pupils requiring a 1-1 assistant at risk.
Support groups – These will accept people without a diagnosis but it will be difficult finding the right group without knowing what the diagnosis is, leading to even more parents and non professionals self diagnosing, which can be harmful in the long term.
Accommodations in the community – Many theme parks, cinemas, councils and other public places offer special accommodations for those with autism which helps greatly with managing family days out. The criteria for these is very strict and without a detailed diagnosis report these will also be out of the question for children without a diagnosis.
Disability Living Allowance – This needs a great deal of evidence to meet the strict criteria, a school report or parents report won’t cut it, you require professional evidence. DLA doesn’t only provide financial assistance it is one of the most common criterion in obtaining access to other services or accommodations, without DLA a lot of doors remain firmly closed.
School I.E.P – This is an individual education plan provided by school within school’s budget. This doesn’t require a diagnosis and is based on a child’s individual needs. This it seems is the best our children can hope for and is insufficient to fully meet all their needs. This only provides support within school and doesn’t help them in the many other areas of their life a diagnosis would provide support for.
Another concern about not diagnosing children is their future mental health. A child growing up knowing and feeling different and not understanding why can have a devastating effect on their overall mental health and self esteem. Simply having the answer to why they are different and the ability to explain this to others can have an incredible effect on their self esteem and ability to cope with modern life. Take these answers away and you are more likely to have a child presenting with future mental health problems as they grow older. I’ve recently become aware of a lot of talk about autism being a cause of premature death and when investigating this further it would appear that some research points to a higher incidence of suicide in people with ASD, a diagnosis at a young age would make such a difference in reducing this tragic outcome.
I’ve heard the statement “just go private” a few times since these plans were announced. I had already looked into this option for George and have again obtained quotes for Faye which were in the region of £3,000. This isn’t something we would be in the position to pay for, not only that the reason we didn’t pursue this path with George is because a private diagnosis doesn’t get access to services or support as the NHS and schools will not accept a private diagnosis.
We have fought so hard for George and now it appears we will not even get a chance to fight for our daughter, she is being written off at the age of five with no thought for her future mental health and well being. I would not be exaggerating to say I am terrified for her future and those of the other children who will suffer as a result of this callous plan.