I’ve been debating how I was going to word this post for a few weeks now, but no matter how long I leave it, it remains very much a jumble in my head, so that is likely how it’s going to come out here. I have my adult autism assessment coming up in just 10 days (21st October), and whilst I’ve thought for a long time that I had “some autistic traits”, it never occurred to me until about 14 weeks ago, after a failed attempt to eat chicken sausages.
Living in refuge and technically being homeless, we have access to the “FareShare” charity. It is the UK’s largest charity tackling food waste, whilst also fighting hunger. They save short date food from supermarkets and local independent food shops/cafes, and redistribute it to vulnerable adults, children and families. So, once a week I get a bag of free food. They take into account food allergies, and whether you are vegetarian/vegan or not, but other than that, you get a very mixed jumble of items. One such bag contained the now infamous chicken sausages.
I had an instantaneous aversion to them, what with pork sausages being the only “proper” sausages. My friends told me that they were actually really rather nice, and that I should try them before writing them off. So, against every fiber of my being, I opened them. The smell got to me first, they smelled “wrong” which to my brain, equates to having gone off. they also looked wrong, which meant that I couldn’t even bring myself to touch them to get them out of the packaging. I had to use a fork to do that. As they had a somewhat short date on them, I decided to cook the whole pack, then what I didn’t eat for tea could go into a sandwich the next day. I arranged them on the tray, put them into the oven, set the timer for half way, and went to go and sit down. I shared with my friends what my response was, and I became increasingly agitated. Still, I’d agreed to try it, so once my meal was cooked, I sat down, cut a small piece off… put it into my mouth… and promptly projectile vomited. I just couldn’t cope with anything to do with it. The smell, the appearance, the taste, the texture….it was all vile. After cleaning up, and responding to my friend’s many messages in our group chat, asking for my reaction. I described to them exactly what had happened, in great detail. I will spare you all those details.
One friend called me straight after that explanation, and said to me “You’re autistic. You need to ask your GP for a referral to the adult assessment unit”. That got things turning in my head so much so that at my therapy session the next day, I explained to my therapist what had transpired the night before, and asked if she thought it would be worth speaking to my Dr about, and to my surprise she said she could do the referral, and we could go through the initial screening “test” then and there if I wanted to. Obviously I said yes, I’m not one to hang around. She asked the questions, and I answered honestly having no idea which way it would go. As she finished tallying up the results, she exclaimed “Oh wow! I’ve done hundreds of these tests before, and never had anyone score 10/10 before!” I burst out into shocked laughter, saying that that wasn’t the type of test that you wanted to get full marks on! She said she’d write up the referral, but it may not get sent in for a couple of weeks, as she was taking a week off the next week. This was on Tuesday, and she didn’t know if she’d have time to finish it and send it before the end of that Friday.
Again I was taken by surprise when she text the next morning around 10am, saying she’d sent the referral in. I guess she had plenty of examples to pad out the referral in her notes from our previous sessions, plus the “sausage incident”. I carried on as normal over the next 2 weeks until our next session. At the end of that next session, I was told that the referral had been accepted, and that they would meet with me… at some point. Mental health services can be slow at the best of times, let alone during a worldwide pandemic, but the majority of people have to wait 18 months – 2 years in order to be assessed. I thought that I may have been seen a little quicker due to being in refuge, but I didn’t expect my therapist to say that I had been put on the urgent list, which meant being seen within 12 weeks of the date they accepted the referral. About 3 sessions ago, Kate (my therapist) told me that they’d like to meet with me on the 21st October, but were giving me the choice of where to have my assessment. Either I could go to the mental health unit as everyone else does, or given my circumstances they could come and do it at the refuge office, to try and minimize my stress a little. I chose that option, because I at least know where it is. I don’t want the added stress of trying to find somewhere new so early in the morning. My appointment time is 9.30am, and seeing as it is in Scotland at the end of October, no doubt it will be a very cold, very rainy morning. Bad luck is the only kind of luck I have!
At the end of last week’s session, Kate explained to me that usually they ask that a parent or someone who has known you since early childhood go with you, to answer questions about when you were a baby and young child. That isn’t possible, given the fact my family are 400 miles away and my mother is uncooperative, so I was emailed the pdf of the assessment to print out, and to try and get as many answers out of my mother as possible. On Saturday afternoon, I endured possibly the longest hour that ever existed. I’d mentioned to mother in passing that this would be happening, gave her a few days notice so she could warm up to the idea. I worked incredibly hard to come off as neutral/positive about it as possible, made her feel like there was no judgement and that it was no big deal, they just need answers to stuff I couldn’t possibly remember, I joked saying she should start thinking about all the “weird stuff” I did as a baby and toddler. The first bombshell dropped when her immediate reply to that was “What, like when you used to scream, rock and slam your head against the wall or floor for hours on end?” “Yes mother…exactly that sort of thing. How old was I when that started?” “Oh, about 8 or 9 months.”
Saturday afternoon came, I had the questionnaire printed out on my little table, and had my iPad set to secretly record. I thought they may like to hear some of the answers coming directly from her, but knew she’d go silent if I told her I was recording it. I can not even begin to describe how hard it was to remain cool and calm when listening to her explain how I’d have these “tantrums” where I’d scream, violently rock, and slam my head off of whatever hard surface I could find for HOURS until I exhausted myself. Hearing her say how it was “funny” when I was a toddler, and how she used to threaten me with “shall I open the front door so the rest of the street can hear you?!” How she’d almost sent me to boarding school multiple times, just to get rid of me. How I’d once thrown my plate during a “tantrum” “just because she squirted the tomato ketchup all over my dinner, instead of in a puddle at the side”, which ended in mashed potato sticking to the wall, which my brother thought was hilarious so joined in. I was old enough to remember that one. I got sent to stand outside for an hour as punishment, whereas my brother had no punishment. She remembers both of my older brother’s first words, and when they started walking, but not mine. She said that as a child, I was “uncontrollable.”
She spoke about how as a child, everything had to be in straight lines, from my toys as a toddler, to decorations on the Christmas tree. We both laughed at how hard I’d deliberately tried at 8 or 9 to make sure that the decorations were evenly spaced, and yet when I stepped back, they were all in lines.
She confirmed that I’ve always been funny about food. How I wouldn’t eat my meal if the food groups were touching, or if there was an excess of sauce (still like that now), and how I’d go through “weird phases” where I’d only eat one or two things for weeks-months on end until I got fed up of it, and moved onto the next thing. So many classic symptoms, but yet she did nothing about it. Even if she didn’t know or suspect autism, how could anyone, let alone a mother watch their 8 month old baby slam their head against the wall or floor for hours, in such distress but not seek help?! She also mentioned at one point about how I used to bang my head off the railing of the cot she used as a playpen for me downstairs.
I was so exhausted after that phone call, that I immediately went to bed and slept for 4 hours straight, woke up and ordered food as I was still too exhausted to cook, and then went straight back to sleep for the night as soon as I finished eating. Sleeping through the night is unheard of for me. That form was filled out using my mothers words. Kate asked me to also write down all of these events as I remember them, as well as the “signs” I still have today.
Two sessions ago at the end of our session, she randomly commented “If you don’t walk out of that assessment with a diagnosis, I’m going to have to quit my job!”, and at the end of the last session she said “If it were just up to me, I’d have been waving the autism flags weeks ago”. From what she has said, the diagnosis is as close to guaranteed as possible, but it will be down to them to decide what if anything (OCD, ADHA etc) is diagnosed alongside it. For now, all I can do is write out as many things as I can remember, and be prepared. I did do the AQ50 online, and scored 48/50. Considering I struggle to process my emotions at the best of times, I just can’t wrap my head around this. I have asked her directly “How did you ever think I was normal?!” and “Why didn’t you get me assessed years ago?” but yet she just goes silent and unresponsive. I knew I was neglected as a child, especially emotionally, but as far as I’m concerned, this goes far beyond that.
Roll on 21st October 2020.
The offending chicken sausages, root mash and sweetcorn.








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