Autism Diagnosis at 42

My husband and I met on a Forest School training course in 2009, it was a 5 day residential course and around mid week his nickname for me (Scuffer) was coined. We were all sent back into the classroom, everyone was seated except me and the tutor said something about me needing to hurry because everyone was waiting. I had my boots undone, but still on and I very slowly and deliberately scuffed across the classroom to my seat on the far side. Gareth, having worked with autistic young people for years, decided due to this and other moments spent with me that I probably had Pathological Demand Avoidance (PDA) but didn’t share his thoughts with me.

Forward on a few years and we had one child with a brain condition which presents very similarly to autism and another child waiting to be assessed. I started to research autism and how it presents, we home educate our 5 younger children and I wanted to be prepared to support them as best I could. As I was reading I started to realise that so much of it made sense to me and my experience and I started to question whether I could be autistic. When I raised my thoughts with my husband he felt it made perfect sense to him.

I stumbled across the AQ-50 test online and decided to take it, it’s a rather blunt tool, but useful as an initial indicator of autism. I scored highly on the test and decided to speak to my GP about being assessed. After a little pushing they agreed to refer me, contact was made, I had to take the AQ-50 test again for them and they agreed that I should be assessed. The waiting list for adult assessment where I live is around 2 years. I contacted the university I attend to ask if any support was available and they said that until I had a diagnosis they couldn’t help, however I could be assessed via the university if I paid a small amount towards the assessment.

Two months later it was time for my assessment. By this time I’d already made some changes to my life, I’d decided that it didn’t actually matter is I was autistic or not, but if I treated myself as if was and gave myself a bit of a break with things I find difficult that could only be a good thing. I’d taken the AQ-50 again for the university, they spoke to my mum to get some background on my childhood and it was time for me to go in for the assessment.

The assessment appointment is one of the most exhausting things I’ve done, it was 3 hours long and necessarily went into lots of detail about my life and experience. There is strict criteria to fit in order to be diagnosed as autistic and the psychologist had to be sure that I did fit them.

Even though I had realised I was probably autistic when it got to the end of the appointment and was told that she felt confident to give me an official diagnosis I was completely floored. I didn’t know what to say to her, having talked for 3 hours I was exhausted, rung out and ready to get home. I remember leaving them room and thinking surely that can’t be it? They can’t just send me off with this information and no way to process it.

I was surprised at how hard I found my diagnosis, for a few weeks I was in shock and seemed to be “extra” autistic. Someone had warned me it might happen, it’s like all the things I’d been holding in were out. Even now a few months later I find myself examining my life through this new lens of autism. My experiences are changed because I can see how they are shaped by autism.

There’s also an adjustment to having a diagnosis which is considered as a disability, I can see the many strengths autism gives me, but I’m also aware of the difficulties I face day to day. It does help knowing why, it just feels strange.

I’m still adjusting and learning more about myself all the time, I am so glad I got assessed, so much about my life makes sense at last. I also manage my time much better and forgive myself for needing a quiet day or two after being sociable. It’s a learning experience and I’m enjoying it as much as I’m finding it hard.

Checking My Prejudice

I honestly feel that we all have prejudices, we may hide them or pretend we don’t have them, but they exist. It’s hard to face my own prejudices, however I’ve come to see that the only way to develop as a person is to face and question oneself. I say this as an open minded and liberal woman, who was raised by an open minded and liberal woman.

I am going to share a story that I’ve never told anyone, but which I carry with me and not without guilt. I was raised near Brighton, it was just a short bus ride away and once I was old enough I was allowed to head into town with my friends. I feel incredibly lucky to have been raised near such a vibrant city, where seeing LBGTQ people was not unusual. On one of my first trips into the city with my friends I saw what I assumed was a man dressed in what I thought was women’s clothing, they had on a beautiful, long haired wig and lots of make up. I can picture them vividly now and I think they looked fabulous. In a not too subtle way I loudly hissed to my friend as they passed “look, it’s a man, a man in women’s clothes!”

The person I had spoken about heard me, turned to me and shouted something in my face about my rude behaviour. I cannot remember what they said, but I remember vividly feeling my shame at what I had done.

I was ashamed because I had been raised not to be rude, I was embarrassed because I had got my behaviour wrong (something I always feared doing) and I was sad because I had upset a stranger who was simply walking down the street minding their own business.

As an newly diagnosed autistic adult I can excuse my behaviour by saying I didn’t know that what I was doing was wrong, but I know that I was behaving in the way I did because I didn’t understand that I was simply seeing a person living their life the way they wanted to. Despite being raised near Brighton I had probably never seen a person who looked so unusual to me, I acted out of prejudice because it was new and unknown.

It had a profound affect on me and affects me to this day, I still don’t always get things right, but I’m listening and learning all the time. I am trying to raise my children with awareness and talking to them about people and our differences. We live in a very white, rural area. It bothers me that no longer living in a city that they see fewer people of colour, fewer minorities, fewer LBGTQ people, hear fewer different accents and languages. At times they will comment when hearing a different accent and ask if the person is talking a different language and I have to explain that not everyone sounds the same and that we just need to make more effort listening and understanding. I hope I am doing enough and I hope they will grow to be adults who question their prejudices too.

Confusing People

I’m going to start without preamble as I’m pretty much using this as an online journal and I’m not sure if anyone will find it. I’ve had an online presence for a long time now, but recently I’ve been struggling with my favourite places (Instagram and Twitter). It’s not their fault and it’s not my online friends fault, but there’s a lot going on in the world that is making me anxious and sometimes spending time online makes those anxieties worse so I’ve made the decision to step back for a little while. However, I do find the need to get my thoughts out and find myself returning to my old friend, the blog.

Today I had a call from the children’s hospital to say that Ruby was due an eye appointment, during the conversation I managed to confuse the person at the other end of the phone. Ruby is still ‘Arthur’ on her hospital records and it has a tendency to lead to confusion. I referred to Ruby as ‘they’ because I didn’t want to confuse them by saying ‘she’ and then the person on the phone thought that I wanted to make an appointment for more than one child. Then I rather clumsily explained that I didn’t want to say ‘he’ as my child is transgender. There was a rather extended silence and I thought for a moment that the person had gone, but then they seemed to understand and carried on making the appointment.

Perhaps it would be easier for me to change her name with the hospital, I will talk to them about it. I don’t want to have to have the discussion every time and it can be difficult at appointments when they call for Arthur as it’s not how Ruby identifies herself. Actually, I think the best course of action at this point is to ask Ruby what she would prefer, after all it’s her name and should be her decision.

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