autismawarenessgapslivedexperience

📝 What is it really like to have autism! How you can help them and my story What is it like to be human? Don’t you hate it when people answer a question with a question? Oops – did I just do it again? Well being a person with autism spectrum is a different experience for everyone. One might think that as a mum with autism, I would better relate to my son Tom who has autism too. Unfortunately that is not the case. We do however like our space and do not always talk too much like a normal mother and son, but we both have a lot of things to talk about in common and some same interests that we share for hours on end! I have a hard enough time trying to understand “neuro-typical” people let alone someone whose neuro-pathways are just a little misaligned but in a slightly different way than my own. Tom is very much an individual and very different to me. Then again there are autistic traits we both possess making it easier for me to relate on some levels, like I can with all autistics. There seems to be a connection in the autism community including ADHD and sensory issues. Myself and Tom have sensory needs, and actually all my children are somewhere on the autism spectrum whether it be ADHD, sensory, or another son with autism. And my granddaughter! She does not sense danger, she can run off and is very social, but I know when we grow up in our family we learn to mask some things! Let me just start with “Me” as I’m mainly speaking about myself and my view of the world, since that is what I understand best. Now I’m not saying I fully understand myself but who does? As a kid I had almost NO understanding of myself!   Socially awkward or what? As a child. Like most kids I tried to understand myself in relation to the world around me. The solid world – the objects that I could see, smell, hear, and touch – made sense. Other people were a different matter. I had a few friends growing up and most were almost 6 years younger. I found them when I was in high school so it was easy for me when we played games with rules, like most ball games. It was a little harder when it was time to pretend. My interests were different from those of the other girls. I didn’t like dolls. I didn’t like playing “house.” I felt no enjoyment in the fantasy world of developing emotional bonds and mimicking the social interactions of older girls or adults. A tea party? Really? I didn’t like the taste of tea, and some sink water in an old toy teacup that only minutes before rested at the bottom of a dust-filled toy chest… gross! And then to be told by my peers that the point of the game was not the drinking of the tea, but of interacting like a bunch of stuffy “grown-ups…” And WHY are we acting like boring adults? I could however pick up an instrument and try to play. Now days I can pick one up and learn to play it within a week or 2 – yes that is true! It is a gift I have. And all self taught with just odd lessons. Clothes tags was and still is the biggest problem as I would stand there till I ripped them out and made a hole in the back! All this added to my challenges. I had a very hard time reading facial expressions or the tones of a voice (I still do today, but not to the extent I did as a child). I started to notice I could never look people in the eyes properly and they thought I was lying about things. Interestingly I saw that other people seemed to have this magical understanding of other people’s feelings, so I mistakenly assumed (for much of my life) that people would understand how I felt and what I was thinking. I was baffled when others didn’t act toward me the way I thought they should behave or treat me the way I thought they should treat me – after all, I always tried to act toward other people the way I thought they wanted me to. It wasn’t uncommon for a peer to ask me, “wouldn’t you rather go play somewhere else?” I guess most neuro-typical kids would understand this statement as a hint to go away. Not me. I didn’t really understand why someone would be concerned over my desire to play somewhere else. The way I figured it, if I wanted to play elsewhere, I would go elsewhere and they wouldn’t need to ask (and I didn’t understand why they felt the need to ask me – it was so weird to me). I would answer dubiously with “No. I want to play here with you.” I can still feel in the pit of my stomach the uncertainty and anxiety that I would feel when I saw the other children’s eyes roll, and hear the barely-masked whispers. If older girls were involved they would often just tell me, point-blank, to leave. ”Why?” I’d ask. You can imagine the annoyance they felt with me then… and I had no idea. I just wanted to know why they didn’t want to play with me. A lot of kids I would leave – still wondering what I did that the other kids didn’t like. Well, Every now and then one of my peers would express an interest in a horse game. Things would turn a bit sour when the girl stated she wanted to play the role of a pink and purple pony with sparkly feet. I would play NO such game! Horse’s can’t be pink or purple and they’re called HOOVES, not FEET! Once again I would unwittingly morph into Mr. Spock from Star Trek… and what normal girl wants to try to play make-believe with a Vulcan?   Comorbid issues and skills I have dyslexia and hypermobility too. I never took an exam in my life, just courses where spelling and punctuation don’t matter! I was in special need classes or had one to one support till I left school at 16. Unlike my son Tom, I am not a maths genius. My gifts are music, acting, creative writing, writing songs! And remembering lines and things I hear or learn. They say I have learning disabilities but I feel “under educated” and prefer that term. In the early days I found it harder to mask and back in the 70s it seemed like bad behaviour, not a cause or reason! Masking caused stress and I have had gastric issues all my life, and more recently more health issues.   Sensory Issues Explained As with most people with Autism, I have sensory issues. My senses act and react differently than those of neuro-typical people. For the most part I am hyper sensitive. Clothes itched and irritated my skin. Tights were the worst, especially when they would ride down then the seam would rub me to tears – I won’t wear tights no more! Avoiding negative sensory stimulation became more important than fitting in or behaving in a socially acceptable manner. While other little girls knew better than to fuss with undergarments in public, I had to. Yup I was that kid, over in a corner doing the butt-wiggle-dance, oblivious to the looks I was getting from everyone around me. That statement may sound weird to you if you don’t have sensory issues, but lots of people – adults and children – have hidden disabilities. The best way I can describe it is that it’s like getting stung by a bee in a public place. You don’t just stand there trying to hide your discomfort – you swat at it, cry out and ask around for ice. The only difference is that your bee-sting explanation will seem far more acceptable to your peers than my tights pain explanation. Colours are more vivid sometimes, even blinding. Light can be painful… and loud! (Yes the buzz from fluorescent lights can be horribly distracting and annoying for me). Noises sometimes make me feel as if I have knives in my ears. (I have always loved fireworks, but I used to cry as I watched them as a child. The sight was beautiful to me, but it was accompanied by horrible pain. People would wonder at my tears. Meltdowns made it look like I was having a naughty tantrum, and I only felt more embarrassed and different knowing that somehow the dazzling spectacle wasn’t hurting anyone but me.) Crowds – well crowds are positively dizzying to me to this day. My younger son and I find crowds overwhelming. Any one of these overwhelming sensations can cause me to become over stimulated. Here again, think of that bee sting. Becoming over stimulated can be like getting stung by an entire nest of bees. Overstimulation can cause anxiety, meltdowns, frustration, anger, loss of speech or a complete shut-down… any number of reactions as the brain’s way to try to block out some or all of the sensation. I try so hard to hide it. I usually internalized the deep stress and anxiety I feel. Sometimes I focus my eyes on something very small like a bug or a chip in the paint. I still to this day carry little tiny teds with me to fidget with to get me by so I don’t go in to a pure melt down in public, but sometimes I can still melt down in public. By focusing deeply I learned to block out some of the craziness I feel so submerged in. The stress of turning my frustration and pain inward cause me to have regular stomach and intestinal issues. Honestly, the best thing to do for an over stimulated child/adult is to find a dim, quiet place. Once the pain of overstimulation starts to subside, I was better able to rejoin a situation for limited times. At Christmas parties or gatherings, I remember taking breaks in the bathroom or even sitting in a quiet corner or room for a few minutes. I still need to do this but again I feel looked at, or worry people think I’m being rude or odd.   How you can help us I think in pictures. If you’ve ever seen the Temple Grandin movie or read her books – yes… that’s how I think. You say “Do you have ants in your pants?,” I see a picture of ants!You say “Hop on over here,” and I see an image of a rabbit in my head. Over the years I have learned what some different expressions mean, but I still see those pictures. I think this is why I enjoy word-play and puns. I continuously think of each of the meanings of each word. It would be good if people who welcome others or work with groups/church could learn very basic signs, specially if someone may be deaf, to see if they can lip read or use BSL or Makaton! There’s always people around who can help you communicate with them too, you just have to ask. Never assume. We all would rather you ask than us feeling left out. Parents and caregivers would like to tell you more about their loved ones – adults or children – and what they are able to do. Some have great gifts and talents. If you run activities or groups, it’s good to ask questions: if people have allergies, if they need medication or have conditions like diabetes or epilepsy, because you just never know and it helps everyone stay safe and happy. It’s important that places say clearly that they are fully inclusive and that they can support people in the way they need it. It means so much to know you are welcome and accepted just as you are.   The “Thoughtful Box” This is why I think having what I call a “Thoughtful Box” is so important – you could have one at church, at groups, or anywhere people meet. It should be there so anyone can use it if they need to. You can put things in it to help with all the things I have talked about: things to dim out the noise like ear defenders, fidget toys, colouring things for adults or children, note books and sunglasses! Anything that helps someone feel more comfortable and able to be there. Many children with Autism spectrum disorders perform repetitive behaviours like spinning or hand-flapping. I sucked my thumb. While thumb sucking is a fairly normal habit for small children, I still do it sometimes! Yes… really. Of course I never let anyone see me do it. I would also focus deeply on the sensation of rubbing the side of my forefinger across my top lip or holding something soft. This was subtle enough to make me look like I was thinking about something, yet provided enough of a stimulus to allow me to block out the rest of the world temporarily. Some children like my granddaughter who is ADHD and sensory can run about, not sit still, even running off can be an issue. All those who have roles or are in charge of things really need to understand a lot of what I’ve said and also that what you say can be hard for some people to understand!   I’m going to stop talking now (I worry I may have over stimulated you)!