I stand before you today not as a representative of the Autism community, but as an individual, as someone who has struggled both pre and post diagnosis.
But can you know what this will cost me later? The hard recovery process I will have to go through just to be able to function at work tomorrow?
Of course, that outcome is subject to me actually making it into the consultant room in the first place – there have been a number of occasions in the past where I have simply walked out abandoning appointments or tests because the waiting room has become too much and my sensory sensitivities have been driven into overload by the potent mix of chemical cleaning smells, screaming children, airless rooms and over busy walls. When you’re not feeling well and already anxious about talking to someone do you really need to be overwhelmed with images of the many ways you could die?!
I like to think that I’m a fairly effective communicator, able to get my point across and be understood, so when I’m finding it hard to get what I need out of my GPs surgery it’s really not a surprise to me to learn of some of the horror stories that the commission heard. Some of the experiences sent in as evidence were terrifying – one woman told us of her 40 year old autistic daughter who was taken to hospital with a suspected dislocated hip only to discover that it was in fact a 2 kilogram cancerous tumour! Another parent told us of their autistic son only being diagnosed as having acute renal failure after having an NHS health check – for which he is only eligible for because he has learning difficulties.
I know I would definitely appreciate an annual health check if only to put any niggling fears at ease and enable me to regularly stay in touch with my GP surgery. I do know from personal experience with my university mentor however that the onus needs to be on the professional involved – I needed my mentor to regularly contact me to see how I was doing, if it was left for me to contact her when I needed I would bury my head in the sand and not know how to deal with the problem, often leaving issues far too long to ask for help with.
And that ultimately is the crux of this issue, why this report was needed. I can’t speak for all autistic people but I can say that the majority of us struggle to ask for help when we need it and struggle even more to cope when we don’t get it.
We’re not asking for the world to change overnight, for every person in every healthcare establishment to suddenly become an expert in autism, we’re asking for the people who hold the purse strings to recognise that we , the autistic community, are a large (larger than you may think!) group of patients (and voters!) who need more support than is currently being provided.
We’re not asking for UNreasonable adjustments or a complete restructure of the NHS. To paraphrase a favourite film quote of mine “we’re just a community of people, standing in front of our representatives, asking them to help us”