There are said to be 700,000 people on the autistic spectrum in the UK, which is 1% of the country’s population. Latest statistics also show that 172,000 adults and children are on the waiting list for an autism assessment.
One man who was diagnosed with autism as an adult was David Wright from Stockport. Here, he shares his personal story of growing up feeling different and how a local disability charity supported him through his diagnosis and his journey to independence.
Growing up with special educational needs
Firstly let me introduce myself, my name is David, I am 42 and I live in the Stockport area of Manchester. In May 2018 I was diagnosed with autism. I also have dyslexia, dyspraxia and anxiety. So it can be an interesting mix and never a dull moment.
Taking you back to my childhood, my parents, sister and I always suspected something was off with me. Certain things I did, for example, I would hide under my mother’s skirts if a loud noise went by, like going over a railway bridge and a train going by below. Going into Boots, all those strong smells, I found that I couldn’t breathe. Volume-wise can be rather overwhelming for me. So for example, on a TV, I have it set to four and I can hear it perfectly clearly, which is more comfy for me.
People don’t believe this but until the age of four, actually on my fourth birthday, I was completely non-verbal. There was no baby talk, no developing or delayed speech, nothing! Then on my fourth birthday, sat in the living room with my family, I spoke. It wasn’t broken speech. It was silence to full-blown conversation in the space of seconds. So I was certainly listening and taking in my surroundings. My parents freaked and thought devil child!
Now before this, my parents tried to get help and support for me, but they got nowhere. So many appointments, meetings and visits to the hospital. My parents were told I was deaf, this clearly wasn’t true, as I would look if my name was called. They were told I would never cycle, swim or drive. I managed to do two of the three, cycle and swim.
As a child my special interest was computers. I have a question for you – can you guess my age when I built my first computer from scratch? – I was five years old. Since then, I have lost count of how many I have built now, with me being aged 42.
Driving-wise, I had lessons, I did try. But there was one small problem. For me to process things, I need to see what I’m doing, so I would look at the pedals and gearstick, rather than that little thing called the road. In exam situations, my mind simply goes blank. So driving wasn’t for me and didn’t happen.
With food, smells, tastes and textures, I am very sensitive. If things are brightly coloured or strong smelling, I can’t do it. It makes me gag or sick. With this in mind, I prefer plain coloured and flavoured foods, by some, I have been given the name Mr Beige.
As for employment, I have always worked in education, in schools, colleges and universities, I have done them all. I was a computer technician, so computer problems would come my way. In the space of 14 years, I had four redundancies. The fourth is the one that broke me. This sent me into counselling.
Discovering the signs of autism
Talking through things with the counsellor, one thing they said, is that it could be that I have autism. This stuck with me and when I got home I looked up signs of autism in adults. It was as though reading my life story. I noted the signs I thought were true for me. Next to them, I then wrote, how I thought that they reflected in me.
At this stage, I felt that I needed to see my GP. I didn’t want to go alone. I wanted someone to go with me. I felt that I wanted this to be someone that I didn’t know so that there would be no judgment. I didn’t want my family, as my parents are now in their 70s and I didn’t want to put them through things again. With them having already tried in my childhood and sadly got nowhere.
This is where I made contact with the Disability Stockport charity and my support workers who work for them. They have now been helping, supporting and understanding me for seven years, they are my rock. They have been through every step with me.
They came to my GP appointment with me. Speaking with my GP, I said I suspected I had autism and provided him with the notes I had made after my counselling. My GP said, in his own words, he was happy to put me forward straight away for assessment and that I had done the work for him!
Getting the autism diagnosis
Around six weeks later, I got the date for my assessment. This is when I found out, that at the time, if you lived in South Manchester, which I do, you’re assessed in Sheffield. This made no sense to me at all. It was something that had stood for many years. Recently it has changed and now can be done at Stepping Hill Hospital in Stockport.
Now am sure, as you can imagine, I was panicking, I had never been to Sheffield before, and I had no idea how to get there. The person I would be seeing, I had never met before.
Talking through things with my support workers really helped and still does now. They told me they would take me to Sheffield, they would stay there with me and then bring me home. This is exactly what they did.
The time came and we made our way to Sheffield. Random this is, but it really helped to keep me calm and settled. On the way, we had Christmas music on and we sang along.
With service users of Disability Stockport like myself, if they can, they provide two support workers. This is in case one is ill or on holiday, then the other can step in if needed.
With visiting places I have never been to before, things that I have found really help include having pictures of inside and outside the building, the space of the building where the visit will be taking place, the reception area and perhaps the person who will be at reception on arrival, pictures of the person or persons I will be visiting and pictures of the local area. This all enables me to know things to look out for.
Having a dummy run to put the pictures into practice is important to me. This can include looking into how long the journey time will be to get there and back, looking at travel options such as buses, trains and trams in the area and making sure to travel during off-peak hours, so being less busy. This all provides a degree of familiarity and calms things somewhat.
My assessment took around 4 hours. So it was rather long. We spoke about my childhood, through to the present day at the time. They were looking for signs of autism. In the end, I was told my report would come through the post and would take around 6 weeks. This wait would have been a broken record, going round and round in my mind. They did say the report would be rather long. It was, it’s 28 pages long. Most of it, I don’t understand, lots of long medical words. Before we left, they did thankfully say to me, that I did indeed have autism. Even that took so much weight from my mind.
I told my sister and she responded that she had suspected it but she didn’t want to upset me, which I did understand.
Living as an autistic adult and becoming an autism ambassador
Getting back home, I was asked by many people how I felt. It answered a lot of questions and it was a good and positive thing. It’s given me the strength to be the Autism Ambassador for Disability Stockport and give many talks helping spread knowledge, awareness and understanding,
It gave me the strength to start to write a book that I am working on, having secured a publisher for the book. The book only came about after being simply suggested that I could write a book.
I’ve found the introduction of things like quiet rooms and quiet showings of films in the cinema has helped me. The cinema can provide adjustments such as the volume being lower, the lights being up a little and being able to walk about.
Some supermarkets offer quiet periods, where there are fewer customers and turn off music. Something I have found that can perhaps further help in these situations is a radar key. This provides access to disabled toilets. Where you may not perhaps need the bathroom, but simply have access to a quiet space.
Shopping-wise, if I spot something I like the look and feel of, if I can, I tend to multibuy, this way keeping the shopping visits to a minimum, for example with shirts and shoes. Certain social situations I do find do have me feel rather awkward, communication-wise for example, so where possible, with such things, I steer clear of them.
I do find that I can be very sensitive to touch and personal space. For example with hugs, to me, they are very invasive and make me feel very nervous.
I earlier mentioned the charity Disability Stockport. This is my support network. They really do understand and know what is important for me and so many others.
Planning-wise, I gave an example of a little earlier when visiting somewhere that I hadn’t been before. I have support and help through this entire process.
Something that really can help is working through things in a structure. An example of this for me is that I see my support worker every week. Throughout the week, on my phone, I note down any concerns I may have. Then one by one, we will discuss and process them. If any of them need acting on, then we do so. Rather than letting concerns build up and be a broken record in my mind, that goes round and round.
I notice, that with any changes, my support network and support workers will always give me as much notice as they can. This way I’m being better prepared, rather than the situation being a shock. My support network and support workers know timing is key, so they very much always stick to times and always follow through with things that they say.
I have had really positive feedback and encouragement from sharing my experiences, which has spurred me to continue looking for new opportunities to be involved in training or talks. I hope it helps individuals who may have received a diagnosis to relate to or to help other people to be more understanding and accepting.
Since having the encouragement, guidance and belief in me from my support network, which most of my life was lacking. Now I do not do things by halves ‚ ì recently arranged for a film crew and a group of willing volunteers to film in a local leisure centre and produce a virtual experience film from a person with autism’s perspective. The film will be published soon and it will be used in autism training sessions for attendees to experience what they may perceive as a usual trip to a leisure centre, maybe a completely different experience for a person with autism.
Keeping busy, I regularly reach out to businesses and I am often successful in obtaining donations and equipment to support the charity I volunteer for. I also help with any projects and arranging activities and guest speakers for an Autism Social Group.
Being such a big part of a charity, I feel that I am making a positive contribution and in turn, I feel valued. Having the right support can really make a difference and I hope that I can inspire others to get involved where they can. Whilst I understand that everyone is different, it has helped me to have a focus and purpose and I would encourage others to share their experiences if they feel comfortable to do so.
Are you a person with autism and can relate to some of David’s experiences? Let us know in the comments box, on social media or by contacting us with your own personal story.