Living with Autism Diagnosis as an Adult
Autism is a neurological condition which affects communication, perception and interaction.
I wasn’t diagnosed with high functioning autism until I was 25, and by that time I had endured years of bullying and being called names, I hadn’t known why I was different, I just was, and I couldn’t change.
When I gained a diagnosis, less was known about autism, and there were no diagnosis facilities in my county, so I had to go to a big hospital in London for diagnosis. It was a day-long process, and very stressful. I am happy that it is now easier for others to get diagnosis, although it still varies from county to count, but autism is becoming better understood and accommodated for.
The diagnosis was a relief and a shock, suddenly I was no longer ‘stupid’, ‘awkward’ or ‘troublemaker’, I was me, me with autism. But I was left alone with the diagnosis, alone and with no support available in my home county, and not enough money to travel to get help and support in neighbouring counties.
My local GP surgery was no help, and so I continued to struggle alone with my diagnosis. I was very isolated, and I didn’t have many friends. The people I knew in church weren’t really friends, they felt it was their ‘Christian Duty’ to to be kind to me, but that really made me feel more isolated. I was not close to my family, through choice, and so I felt very alone in the months after the assessment.
I had to get used to the diagnosis myself, and work out, now that I was ultimately diagnosed, how to live with the condition, after struggling without diagnosis for so long. My autism is mild, but it still affects me. In some ways mild autism is really hard to live with, as I am not entitled to any government help or care, and so I have to look after myself alone. I am fine with most daily tasks, but when it comes to communication and paperwork, essential phone calls, tax and social security, as well as socialising, I can end up in difficulties or very stressed.
It has been a long slow process, working out how to live with the condition, in ways that will least inconvenience me and others, and even despite my best efforts, autism will always affect my life and interactions, I will always be ‘introverted’ or ‘A little bit socially awkward’, no matter what I do, and that is hard to live with.
I have to prepare well for any outing, change of scenery, change of routine and event. I have to decide what situations to declare that I am on the autism spectrum, and when not to declare it, as there is still a lot of prejudice around, despite the law.
If I was to apply for a home or a job, I wouldn’t declare that I am autistic as I would be likely to be unsuccessful, I write that from experience. But if I got overwhelmed at a social event or if I went to a hospital for medical treatment, I would declare the autism so that they wouldn’t mistake my distress for a mental health episode, leading to me receiving the wrong kind of help. Autism isn’t a mental illness, although some mistake it for one, but it can cause mental health issues due to the challenges it causes.
I have to live in a careful world. I can’t cope with noise at all, so I have to either be somewhere quiet or have earplugs and earphones, I have to be careful to avoid coming across as antisocial. I have to plan what I am doing and I have to avoid getting stressed, sometimes I have to leave situations which will get overwhelming and cause me to go into a meltdown. I am quite rigid in my routines and likes and dislikes. There are things that I will eat and won’t eat, and textures substances and smells that I like and dislike. In a sense, like every person, but in a magnified way.
I don’t feel the need to socialise and spend time with people at all, but I see spending time with people as healthy rather than something that I want, so I try to socialise. I like a lot of time alone, reading and writing, and listening to the same songs repeatedly, although I do that on headphones if other people are around to find it irritating. Like most people with autism I can take what is said to me very literally, and we can at times blindly believe things that we are told, which makes us more vulnerable than most, and prone to errors of judgement.
I work, as I don’t receive benefits or support, but I struggled with work, company regulations, red tape, noise interaction, until I became self-employed, setting my own rules and regulations and working to my own times, taking the morning off and avoiding the world on bad mood days, and making up the work time at the weekend. It has worked well. Here I am, writing this, on a Sunday afternoon, and enjoying repetitive music on headphones, so sometimes life with autism is not too bad.
Autism varies from mild, where people tend to live relatively normal lives, to severe, where muteness and inability to relate to people can be a severe handicap, needing full-time care. Autism affects at least 1 percent of the world’s population. In the USA an estimated 1 in 59 children are have autism disorders, and in the UK over 700,000 people are affected by autistic spectrum disorders. It is hard to get a completely accurate picture, as many cases of mild autism such as mine go without diagnosis. Autism is usually linked with other conditions, for example, depression or anxiety, as people with autism face challenges with everyday life. Autism, especially where other conditions are present, can be overlooked or mistaken for other conditions, such as personality disorder.
Autism is hard to define, as it affects each individual differently and has a wide spectrum of symptoms, and the person’s character, family and environment also affect how the autism presents or whether or not it is diagnosed. But one thing is for certain, autism makes life more challenging for people on the spectrum. It has for me, but I am positive that autism is being better understood and catered for, and many people on the spectrum can enjoy some quality of life.