Powerful words by androofrench to mark the start of World Autism Acceptance Week WatfordMencap
It took me many years – well into adult life – to understand that not everybody ate a roast dinner like me.
I think it was meant to be funny, and certainly wasn’t intended to hurt me. But the trouble was, it left me thinking I was weird. I was unusual. I wasn’t, as the parent has said, ‘normal’. “If we look back to 2008/9 and draw comparisons, getting a diagnosis is vastly easier now but it is still extremely challenging for people largely because there isn’t enough capacity in the system,” explained Tom Purser, Head of Guidance, Volunteering and Campaigns, at the National Autistic Society .
“One of the big drivers in change we have seen in understanding of autism and people being able to learn more has come because since the Autism Act of 2009, there is a way to be diagnosed as an adult in just about every part of the country. “Although as a piece of legislation the Autism Act doesn’t say a lot, what it does say is that the Government has to have and maintain an autism strategy for the improvement of services and support,” Purser explained.
It was an emotional and uplifting piece of television, where presenter Chris Packham worked with four different autistic adults to shine a light on how it affects them and their families. It’s acting really, taking on different personas for different occasions and situations. The trouble is, it means you end up very rarely being your true self and hiding things away from everyone else. It’s tiring, it’s sad but it’s also hard to stop.
I was always the person that found an excuse not to go for after-work drinks, I’d stay the minimum time possible at any event – family, friend or work related – and I would act my way through as best I could without anyone knowing I felt extremely uncomfortable.But seeing the Chris Packham documentary gave me the confidence to tell people the truth.
“For a long time it was assumed by the public that only children were autistic and there was a misconception that you grew out of it, or that if you were an adult the prevailing cultural portrayal in people’s minds was the 1988 film Rain Man, with Dustin Hoffman and Tom Cruise. “It’s not about being able to write down rules that if you follow them, you will be free of discrimination against autistic people. It’s about giving people options and enable them to adjust in their own way.”
Even now my wife will show me some new curtains, then a paint colour, then a carpet sample. I can handle change incrementally, but not in one large lump. It’s an overload. We both understood each other’s position, and the best thing is I can talk about it now, and she is wiser because of what I’ve been able to tell her.
“But there are others who do want that official diagnostic confirmation, and to those people I would say go to your GP and ask for a referral. Find out what the local route to diagnosis is. I have, throughout my working life, had to find a way to overcome my fear of meetings, my hatred of making small talk and my lack of confidence in my ability to interact with people.
One of the main things I need in my life is order. I’ve already explained I struggle with change, but it goes further than that. I can only happily exist if I know what’s around the corner. Put it this way, my family and friends know not to organise any surprises for me. Recently, for one of the longer trips, I booked my hotel may weeks in advance as I normally do. Then, every day after that, I’d check the hotel website, look at its position on Google Maps, even check the roads around on Google Street View.
Once I have it all sorted in my mind, I work out what time I will get away from the Friday Watford FC press conference, and then I have an orderly schedule. Thankfully, their Community Activities Manager Sarah Sullivan was only too aware of the sort of hurdles I face. She sent me a map of where Watford Mencap is, she replied to all my emails and she even met me at the door rather than making me ask for her when I arrived.
“When we started the coffee mornings it was in one room, and in a year we’ve grown to a point where now it’s spread over three rooms,” she said. “We are happy to be contacted in advance and make adjustments. If people want to come but aren’t comfortable coming in through the front door, for instance, we can cater for that.”
Sarah admitted that adults with autism still represent only a small percentage of those that Watford Mencap help, and she’d like this article and general awareness to mean they see more.“We support many people with learning disabilities, but we still don’t see many adults with autism, especially those who have been recently diagnosed.
My experience with Watford Mencap is such that I am returning to meet with the entire team so they can ask me about my autism experiences, and I can help them understand more than they do already.
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