Autism Support in Thanet?
Autism is a lifelong condition that affects the way a person perceives and relates to the world but what help and support is there in Thanet?
It was only a few years ago that I was formally diagnosed as dyspraxic (as well as dyslexic which would probably come as no surprise to regular readers). My family had seen that I struggled with things other people found easy while at the same time excelling at what, to others, were challenging tasks. In fact my family were starting to wonder if I had asperger's syndrome (an autism spectrum disorder) and I can see why.
Despite help from my GP, who was very supportive, realising that I was "different" and wanting to find out why was not something that the NHS was ultimately able to help me with. I was able, after some pushing, to get an assessment for asperger's syndrome. The breakthrough came when my family paid for a private assessment. Learning I was dyspraxic brought me answers but it also brought many new questions.
It was explained to me that dyspraxia was a form of very high functioning autism or, depending on who I spoke to, an autistic spectrum developmental disorder. Whether dyspraixa is part of the autism spectrum or simply associated with it the same neurological differences that cause me to be randomly clumsy (or take wrong turns and get helplessly lost) also give me a head start when it comes to learning about computers (for example).
I now know that there are things that I find far easier than most people but also things that are many times harder for me than most people. Not that this is insurmountable. Just look at actor Daniel Radcliffe, photographer David Bailey, singer Florence Welch, and UK politician Emma Lewell-Buck. All of these people have dyspraxia and are doing just fine, thank you very much.
Knowing what something is and understanding it are two very different things. Having started down this particular road of self discovery I wanted to learn all I could. I was suddenly aware that some of my friends, who I had simply thought of as "a bit different", were also on the autism spectrum. I soon discovered that with greater understanding I also had a better insight into what life was like for them.
Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. Says The NHS.
Some people with ASD had features of the condition as a child, but enter adulthood without ever being diagnosed. However, getting a diagnosis as an adult can often help people with ASD and their families understand the condition and work out what kind of support they need.
That was certainly true in my case. Although it mostly served to confirm things I already knew: my spelling is atrocious and I will, probably, never be a world famous dancer. I can live with the latter and as for the spelling, well, I keep trying.
According to autisticuk.org
40% of autistic children suffer bullying at school. Furthermore, they claim that
Only 14% [of autistic people] live independently and that
Over 70% of those who do live independently have experienced bulling or harassment.
I cannot verify these figures but I can certainly attest to the bullying. My school life was not exactly fun. In fact I could not wait to escape school (college was another matter). Every autistic spectrum person that I have spoken to in my entire life has said that they were bullied at school.
By all accounts, I had got off lightly. Some on the autistic spectrum can find the world simply too overwhelming to cope with, without support. Some accounts make what I went though seem quite mild by comparison.
Everyone with autism is different and autism affects people to widely varying degrees and in many different ways, which is why it is described as a spectrum. says resourcesforautism.org.uk.
While the popular myth is that autistic spectrum people are often hopelessly anti-social geeks the truth is nothing like the myth. I recall one company I worked for (a fairly technology heavy operation) where people still found it mind-blowing that geeks could not only have girlfriends but get married and have children too. We might be different but we are people too.
Without really meaning to I found myself becoming the resident "expert" in autism and autistic spectrum issues. I mean, sure, I am naturally inclined to research and find out as much as I can; I tend to write down what I find out (I'm a writer, we do that). That might be why I am sometimes the person people come to when they are looking for certain hard to find information. For example: What support is there in Thanet for adults with autism and their partners?
The prevalence of Autism in the population is a steady 1.1% across all ethnicities according to my reach. That means that there must be at least 1,100 adults in Thanet on the Autistic spectrum. (Actually given how we are the dumping ground for social services cast-offs once they turn 18, I would say that this is a low estimate). That would also mean that there must be at least 2,500 to 3,000 people who are Autistic spectrum; have family who are, or support someone who is.
Despite this there seems to be a wealth of resources for parents of children with austism but next to nothing for adults. Children that have autism become adults that have autism because this is not something that goes away. Not only do children become adults they also do not automatically stop needing help when they do.
Support for the autistic spectrum in Thanet?
So what help and support is there in Thanet for Adults on the Autistic Spectrum (and their friends, lovers and carers)?
Kent County Council's website was singularly unhelpful. The attitude being that, if you want help and support, you should talk to your overworked GP. Given how well that worked out for me I can tell you that this is not always the answer.
I did what anyone would do and googled it.
The National Autism Society website was down for maintenance apparently they have a Thanet branch but the only details I could find appear incompleate. With some heavy use of Google a Thanet based site can be found but, once again, it seems focused on parents only.
East Kent MENCAP website was of little use, the National Autistic Society Thanet Branch website seemed focused entirely on children with autism; MCCH provide residential support which is good but not what I was looking for.
There does appear to be a term time thing on once a week which, I think, is mostly a play and meet group. This seems to be focuses, again, on children and parents. I don't want to misrepresent the support available so I emailed the people that run the group. I will update this section once they have gotten back to me.
Help and support online
As with many things, those of us in Thanet must turn to the Internet to find what we need. Autism support appears to be no different. As I said already, KCC's attitude seems to be that all the support you need should be provided by your overworked GP.
Asperger and ASD UK Online Forum is an online forum which appears to be positive, supportive and highly active. There are a lot of resources on the forum where people have shared things that they found helpful.
Although it is focused mainly on America autism360.org allows you to create a profile of yourself or another autism spectrum person that you care for and then see the treatments and outcomes that other users with a high degree of similarity found helpful. Features include tracking the severity of symptoms over time and tracking treatments and outcomes. How helpful this is depends on the data you are willing to add to the profile. Expect to spend a bit of time filling in information. One weakness is that if you have more than one child to track you will need to create an account for each.
I found a lot of books about autism but other than that I pretty much drew a blank.
That, to me, does not seem good enough. Not by a long shot.
Rather than just moaning, about what we have not got, I am going to take the initiative. I will either find support and education for adults with autism and thier carers in Thanet or create it. I do not know how I will do this yet so if anyone who has a background in this area wants to join me then please do.