Autism Assessment - Part 3: The Waiting List

I am generally healthy and don’t need to see my GP often, so I didn’t involve my GP to get on the waiting list for an assessment because I have regular appointments with my consultant. Once I had that initial conversation with my mum, it was relatively straightforward to get on the waiting list.

I had been wanting to get on the waiting list for ages before I actually did, but I was worried about what my mum would say because I remember having a bad experience when I brought it up previously. My younger brother was diagnosed in senior school, and my dad is unofficially diagnosed. The more I learned about Autism, the more traits I saw in myself. I mentioned it to my mum a couple of times just as a throwaway comment, and I’m not saying she ignored what I was saying, but she wasn’t fully convinced, so nothing came of it. I think this was because I didn’t display the same traits as my brother and dad. I don’t think my dad had any opinion on it.

About two years ago, I remember having that conversation with my mum again, and it was completely different. I think when I moved into my flat and found my own way of being, so to speak, that’s when it became more apparent. I must have hid them incredibly well for my parents not to notice. As I write this, I’m concerned about what my mum will think if she reads this because I don’t want her to feel bad because she didn’t think about me being on the spectrum, but I want to be open and honest in my blog.

I don’t remember which waiting list I was on first, but I have been on two in total. I think I was on the first waiting list for about a year. My mum has always been heavily involved with my care and appointments, and she takes most phone calls for me because my speech is difficult to understand by people who don't know me well, especially on the phone. My consultant rang up and spoke to my mum, and she said that the first place she sent a referral to had stopped accepting NHS Autism assessment referrals, and she said that she would send a new referral to the Owl Centre. My mum said that she was on the phone doing the form for a few hours. Me being me, I asked my mum what kind of questions they asked, but my mum couldn’t remember much.

Over the waiting period, the Owl Centre emailed me a few forms and questionnaires to complete. I can’t remember the questions in the earlier forms, but the last one was the most difficult because it was mainly closed questions about my childhood, like “Did the person like to hang upside down whilst playing?” or “Did the person like to spin around?” - I know that this was a generalised questionnaire that the majority of people filling it in are able-bodied, but this was incredibly difficult for us to complete because I’ve never been physically able to swing upside down on monkey bars or anything like that. Luckily, they weren’t multiple-choice answers, so we could elaborate, and I was able to adapt and reword a few of the questions to fit my physical abilities. I never thought of spinning around in my electric wheelchair - I did this as a child, and I still do it now sometimes.

Come back tomorrow for Part 4.