What does it feel like to be an adult with autism in the UK
Written on 10th Jun 2015 by Alex Lowery
I write about my personal experiences because I want to make life better for other with autism. I have a lot of family support which has helped me to become a professional public speaker.
I was homeschooled for a number of years. When I was in education, I had support to learn new skills and to keep on making progress. But when my education finished, all this support ended, and I was denied any further support. Just before it finished I was learning bus skills, and couldn’t learn any more due to the lack of support. Even though I needed support I didn’t meet the criteria for Social Services. This made me rather stressed, anxious and worried about the future. My main ambition in life was to live an independent life with a paid job. I was worried that if I didn’t have any or support, I would never reach my goals. I kept on getting times of frustration, and extreme anxiety. I just wish that there was more support out there for people with autism life me who have the same hopes and dreams as everyone else. According to the National Autistic Society, only 15% of adults with autism are in full time paid employment, but we know that many, many more than that can work and want to work, but it’s just extremely difficult to find work. I feel as though there should be more services and supports for adults with autism to find employment and live a normal life.
I had to give up a lot of activities when my support stopped, I could no longer attend the Riding Disabled Vaulting Group. I had been attending the the RDA since I was six. My local Church Youth Group stopped as well and all those who I had grown up with moved away. I didn’t think I was lonely but we recently realised that almost all my socialising happened when I did my speeches.
Recently I have been experiencing very high peaks of anxiety. I just needed help and so I went to a counsellor privately because I knew that the NHS could not help me. I had visited the gp a year earlier and he sent me to a nurse who said she had no one with autism experience who could help me with my anxiety. The counsellor helped me to use breathing and it helped a bit. My mum found out about an autism social group in Buckley and I attended that for a few sessions but then they moved the time and I had to give up because it was too early for one of my parents to take me. I do so wish that I didn’t have to depend so much on other people. I feel that the lack of support has increased my anxiety. Because I worry so much, recently we have been using my money to pay someone to teach me every day living skills and bus skills. My mum said it was the best use of my money and I agree. This has helped to reduce some of my anxiety because I now have hope that I will improve.
What support people with autism will need and how much they will need will depend greatly on the individual, and it’s very important to recognise this, because autism is very different for everyone who has it. In Wales, in order to meet the criteria for Learning Disability services, you have to have an IQ lower than 70. This is one of the worst ways to measure a person with autism’s ability, because they can be extremely gifted in certain ways and really struggle in other ways. I’ve known people with autism who have really high IQ’s, but still can’t manage on their own, and still need an incredible amount of support in life.
There should be new ways for a person with autism to find work, because the right person in the right job with autism can actually be a real advantage to an employer. There are many good things about autism that are good qualities to have for a job. They just need to find the right job as well as the right support into the job. Even the job interview can be an extremely stressful situation for a person with autism, and because they can’t cope with the interview… They end up not getting the job whether they’re capable or not. It’s better to find other ways to find out of a person on the spectrum is right for the job.
There are a lot of difficulties I have which would get in the way of finding and keeping a job. Like a lot of people with autism, the interview situation would be stressful for me. I’d likely need help with transport to the workplace because I struggle to get to places on my own without a lot of support. There should be some form of support with transport for those who need it. Some form of job coach may even be beneficial to some people on the spectrum. Also, I really struggle to follow loads on instructions at once so one instruction at a time is best for a person with autism, as well as the fact that instructions have to be crystal clear or else they could be misunderstood. I’m also not always aware of hazards and things that could be a danger in a situation. This is something that I could do with support with. I also have health problems, and when they get out of control, they really affect my ability to function, so this could really impact my ability to work. There are many other ways in which my ability to work would be impacted, and ways in which I’d need support in work.
I really feel like there should be more support out there for people with autism to find work. I am now in business doing Public Speaking on autism, and I wouldn’t be doing all this without all the support I have from my family. However as a result of having all this support, I am succeeding in my job. At times it’s been hard, but I’ve kept at it. This shows that the right support is really what we need. With the right support, many people on the spectrum can live fairly successful lives as adults.
We need an Autism Act in Wales.
To attend the autism employment conference see here.
Get DVD’s of Alex’s speech here
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