Today I was diagnosed with Autism. I didn’t know whether to feel angry or relieved. Actually I felt a mixture of Both
Im a woman, I’m 45 years old and yesterday, after an appointment to see a psychiatrist, I was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and level one Austism Spectrum Disorder (ASD). For anyone who wonders what those conditions mean, level one autism spectrum disorder was previously called Aspergers Syndrome. I hear that’s no longer politically correct but I’m new to all this, even though none of this comes as a surprise.
Suspecting I was On The Spectrum
Fifteen years ago when I worked as a lecturer, I barely had a grip on organising myself. I was just holding it all together, I was running into difficulty and it felt like a constant strain on my mental health.
Despite my obvious strengths in teaching and my subject matter, I was the worst in my faculty for keeping both paper and online registers for which I was always being reprimanded. I lost things constantly. Having to juggle 120 students and their workloads over a variety of topics kept my brain interested but the busier I got, the more I forgot. the challenges mounted up and I felt like a liability.
Once i lost all the train tickets home on a student trip to London. The train company refused to help until I started to cry and he took pity on me & told us all to jump on and hope for the best. Whoever this man is, I salute him. And he will probably never ever know they were just crocodile tears, but it got me out of a huge scrape that day.
One day, I spoke to the people who dealt with the testing for dyslexia, ADHD and other student learning barriers in college. They told me that if I wanted to complete one of their assessments informally, I could. the test came back with over 80% likelihood that I had ADHD. That was pretty much all the information I needed at the time.
The trouble was, they couldn’t do anything with the information. Because I was faculty and not a student, support didn’t apply to me and I couldn’t seek a diagnosis. My boss did buy me a much more complicated planner: I’m sure he meant well, but it made things worse.
So, I just carried on as normal, but due my impulsivity and “scatty” nature I realised that teaching wasn’t really for me and it didn’t fit with my personality, which was under constant assessment.
I’m actually really good at teaching people how to do stuff. It took me a good few years to realise this, during which I had studied for a second post graduate certificate in education and tried my hand at secondary school. That was enough to put me off for life: it definitely wasn’t for me. Standing in a classroom full of adolescents, who had little interest in the topic, despite my obvious enthusiasm just seemed like a waste of my abilities. That’s when I stopped and decided to work for myself.
What About ASD?
But that’s all pretty ADHD. What about the autism spectrum? Well, for the past few years I had really started to notice my anxiety was triggered in response to external stimulus. By this i mean lights, sounds, touch and so on. One day I read a book called ‘Too Loud Too Bright Too Fast Too Tight’ and it was like an alarm went off in my brain. I related to it so much.
I’ve always felt a bit like I was in a “bubble”, socially awkward, blurring out the wrong thing at the wrong time and not being able to “read the room”. I had put it all down to a strict religious upbringing and the emotional issues I had from that. but thats another story altogether.
I’ve never been able to cope with anything near my face, people getting near my elbows, nudging my chair, chewing, more than one sound at once.
I suffered from panic attacks with no anxiety about the situation. For example, expos. I’ve ran out of several of them feeling overwhelmed, only to get outside and flood with tears. But I wasn’t crying. Tears were just coming out of my eyes. It was entirely physiological.
So when I went to see the doctor about ADHD and he went of track to ask me a series of questions that seemed to be about adult autism, it came as no surprise to me, when I reeled off a list of answers that seemed to be about autism symptoms.
He asked me 9 questions. But the one that stood out to me most of all was masking. He explained that autistic people and in particular women, learned to “mask”. When he explained it to me I cried. I cried tears of relief.
What does an autism diagnosis mean?
All the “feeling out of phase” and not being able to read the room was because I don’t pick up the cues, and i don’t notice body language, but I try to fit in and it doesn’t feel right. I finally felt like I had an explanation and I could just stop trying to fit in. Who I am was just fine. I am an adult with autism.
Since there is no real medical treatment options for autism, what did my diagnosis actually mean? For me it meant answers to years of questions, the most asked being “why is it so hard”. It was also about validation for me. Growing up, autism spectrum disorder and adhd weren’t picked up on as frequently as they are today, and especially not in girls. As a child, my school reports were telling, but whenever i would speak to parents or family members about my troubles, they would say ‘there’s nothing wrong with you’, or ‘you are just scatty’.
So to speak to a doctor and have him tell me that it was in fact brain wiring, that diagnosis flooded me with relief. I cried that day when i got my diagnosis.
Who is most commonly diagnosed with autism?
Most commonly, diagnosis for autism spectrum disorder is given to boys. In fact four times more boys are diagnosed than girls. This means many girls go on to adulthood without a diagnosis, and learn to live with their condition by ‘masking’ or mirroring the social behaviours of those around them, in order to ‘fit in’. Autism is a hidden disability. You cannot always tell if someone is autistic.
According to Autism.org.uk
- Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK. Thats 1 in 100.
- While autism is incurable, the right support at the right time can make an enormous difference to people’s lives.
- 34% of children on the spectrum say that the worst thing about being at school is being picked on.
- 63% of children on the autism spectrum are not in the kind of school their parents believe would best support them.
- 17% of autistic children have been suspended from school; 48% of these had been suspended three or more times.
- At least one in three autism adults are experiencing severe mental health difficulties.
What are the 3 main symptoms of autism?
According to the NHS, the most common characteristics of adults with autism are:
- finding it hard to understand what others are thinking or feeling
- getting very anxious about social situations
- finding it hard to make friends or preferring to be on your own
- seeming blunt, rude or not interested in others without meaning to
- finding it hard to say how you feel
- taking things very literally – for example, you may not understand sarcasm or phrases like “break a leg”
- having the same routine every day and getting very anxious if it changes
Since any one of these markers could apply to anyone, its not always easy to see the signs of being autistic in adults. My autism is Level 1. this means I need little to no support. I can relate to many of the above, except i don’t take everything completely literally. I can understand sarcasm. (mostly). I definitely get anxious in social situations, especially the run up to them, to the point of making myself ill. Im terrible at making good eye contact with people. As a child, my parents called me shifty.
I have friends, but i do need alone time, and have no problem spending extended periods of time by myself. I find it refreshing. I can often seem blunt, but i don’t have too much trouble explaining how i feel. As for routine, I thought i hated routine. The hard part for me here is i have ADHD, so i struggle with routine, but i thrive on it at the same time. Such is the joy of this comorbid condition.
How do I get an autism diagnosis?
I’m in the UK. I wasn’t particularly seeking a diagnosis for my disorder, but I wanted one for the ADHD. The trouble is a lot of doctors don’t believe in it and even those that do have little experience with diagnosis or treatment. The other problem you may face, especially as an adult female that doesn’t need much support, is you aren’t really an obvious candidate for an NHS waiting list.
I went to see my GP. She referred me. I didn’t hear anything for a long time. Finally an appointment came through. But it was followed up by another letter cancelling the appointment. So i had to go back to my GP, who sent another referral though. I didn’t hear anything. after 3 years of this cycle, I went for a private appointment with Clinical Partners, a UK based collective of psychiatrists and psychologist experts dealing with spectrum disorder. I appreciate not everyone is in the position to pay for a private appointment, so i would say push your GP, and keep asking. I could have pushed more.
You will have to fill in a few questionnaires and it helps if you have someone from your past who is able to corroborate your symptoms and give a bit of history. I didn’t. my parents are dead, and for many reasons, I don’t have links to people from growing up. I did have school reports though so that helped.
My appointment lasted 90 minutes and I was questioned on everything from my childhood, my behaviour, what my teachers said, health, drinking, you name it. I would say a good psychiatrist can see it a mile off, and this was why mine was able to pick up on the ASD, despite it being masked by the ADHD.
If you are an adult, and you think you are on the spectrum, or have ADHD, then a diagnosis from a specialist could change your life. As the psychiatrist said to me in his parting words, “its much easier to climb Mount Everest if you have a sherpa, but you’ve managed it alone. Who is stronger”?
This is my first post in what i plan to be a regular blog about adults with ADHD or ASD, especially females. If I can write something that makes any difference, or just raises some awareness, then its been worth it.
Thanks for reading!