We don’t “fit” anywhere. What’s the solution?

square-peg-round-hole-12777364Autism is something that people have been becoming increasingly aware of over the past 20 years, yet people with the condition are still suffering needlessly due to ridiculous red tape and restrictions. The government outlined plans to create a dedicated ‘autism service’ across the whole of the UK, but for most of us, this does nothing to ease our problems.

Most people’s awareness of autism is of the stereotypes, so the super smart Aspie who is socially awkward but can work out the seven millionth digit of pi or something along those lines, or to the other extreme, a person who has little or no language, flaps their hands and appears to be in their own world. While both of these people are indeed on the autism spectrum, they are rare. The majority of autistic people are not at either end of the spectrum, but rather in the middle somewhere. I am one of those people.

My IQ is nothing to boast about. I don’t say this in an attempt to put myself down, but rather to illustrate the points I plan to make. The professor who diagnosed me with autism explained that most of us have what is known as an uneven profile, so some skills might be above average, some average and others below average. This is the case for a lot of autistic people who might show stronger ability in some areas than others. In my case, my ability to write and use language is my skill, but being able to understand what is said to me is in the severely disabled range. As you can imagine, this leads to a lot of problems and misunderstandings, or worse, me being accused of faking how severe my disability actually is. (I personally consider my autism a disability but appreciate everyone does not see it this way, so please don’t take offence or assume I am referring to you or someone you know when I say this) I am deemed to have “mental capacity”, which means people who are not in my head get to decide what I can understand and not me which is frankly ridiculous.

Discrimination against “middle autistics” is rife. Unlike people whose IQ is compromised (or assumed to be compromised, but that is another piece of writing for another day), we are constantly questioned. As our IQ is too high for most counties’ Learning Disability (LD) services and there is nowhere suitable for us to go, we are often dumped into the Mental Health (MH) category which is completely unsuitable for our needs. I myself have even been given a diagnosis of a mental health problem I do not have (This has been admitted by someone who works for our local MH service) in order to ‘keep me in the system’ as autism is not a qualifying condition for their service. Most psychiatrists have little to no understanding of autistic spectrum disorders and as a result our behaviour is often attributed to “psychiatric distress” and we can end up in unsuitable environments such as hospital due to the reaction to a sensory overload. With the stimulus removed, we often recover quickly in hospital (the routine there and the desire to get back to our own environment and belongings may contribute) and are sent home with the same problems that we arrived with. When in hospital, we are often treated as being “fussy” or “demanding” as many of us have sensory needs, avoid certain foods (I mean who actually likes hospital food?), require more attention than an actual psychiatric patient or may display “challenging behaviour”. Yet the route cause is never investigated nor found because the service is unable or unwilling to offer a service suited to autistic people and their sensory profile needs.

Being refused access to LD services and dumped in MH services is extremely damaging for us. Many of us actually develop mental health problems as a result of the constant rejection. While the LD service explores physical and sensory reasons for their “service users’” distress or “challenging behaviour”, we are labelled as attention seeking or worse, manipulative by people who do not understand us. Other autistic people in our part of the spectrum do not receive any support or help as if you do not fit any of the criteria for the MH service, you don’t get seen by anyone. This is denying support, advice and help to a very vulnerable group of adults.

So where is the autism service in all of this? Currently, it lies quietly in the background as a diagnostic service only. As I and many others have already had a diagnosis, this is not helpful at all. For those who seek a diagnosis, I have also heard that there are problems. People who obviously have ASD are being told they do not after a one hour long assessment (Mine took over 4 hours at the Maudsley Hospital) with only talking to the individual and no interest in reading school reports, doctors records etc. All of which can be vital to the diagnostic process. Whether this is due to limits being set on how many people can be diagnosed within a certain period of time or just pure ignorance is hard to gather. The lucky few who actually get the diagnosis, get a few months or so of support in a very experimental and poorly thought out service. After that, they are either discharged, or clumsily dropped into the MH service as they do not fit anywhere else. Both outcomes are poor as being left to deal with a diagnosis on your own is troublesome and being put in a service which focuses on your recovery (from what? Autism?) can cause more problems than it solves.

So what would my solution be? I believe that the LD service needs to widen its criteria to allow people who are autistic but above the threshold for IQ to use its services. Most staff in the LD services are trained in autism and understand autism so it would make sense to integrate the autism service into the LD service rather than MH as it would require less funding for autism training. Ideally, eligibility would be judged on a person’s diagnosis and their difficulties rather than on a number which, as I mentioned, often means very little in terms of intelligence as some skills may still be severely low functioning or sensory problems may cause severe disability or day to day functioning problems.

Yesterday I went to see an occupational therapist at our local LD service under the guise of the “autism service”. It was a one off appointment so despite my needs being identified as quite disabling, I will be getting no further support from the service as my IQ is a little bit too high. For the first time in my life ever, keep in mind I am 30 years old and have had an autism diagnosis since I was 19, my sensory profile was properly and carefully assessed. The OT brought in a weighted shoulder band and lap blanket for me to try which both immediately calmed me down. It has been determined that most of my “emotional outbursts” are, in fact, a reaction to the constant sensory overload that I suffer from on a day to day basis. No one in the MH service has ever considered my sensory processing being the cause for a lot of my meltdowns or “challenging behaviour”, instead I have been accused of being emotionally unstable (anyone who spends a lot of time with me knows this is untrue) and also of being in complete control of my behaviour in order to manipulate others. These are assumptions I have heard about from many of my friends who are in similar situations to my own, especially other women. There are no specialist autism nurses in the MH service to offer support or long term care, nor does there seem to be any rush or plan to get one. The service is completely inadequate for us and this needs to change urgently. Sadly, for a lot of us, this change may come too late as our feelings of distress and inadequacy get too strong and we decide to take our own lives. This is why I want to step up and tell people my experience and hopefully, with help, we can change the criteria for LD services to include ALL autistic people who require support.

In the meantime, I had better get back to my recovery star…

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