0 Blogging About Autism: Things You Should Never Say to a Person With Autism

Sunday, 22 September 2019

Things You Should Never Say to a Person With Autism

Hurtful and Invalidating Comments

Things you should never say to an Autistic person are any of the general invalidating things that people tend to say on a daily basis. Things like “you don’t give off any hints of being autistic,” Or “you don’t look autistic,” it shouldn’t really need explaining why these comments are distressing but as an Autistic woman who was not diagnosed until I was 26 years of age. I have become quite good at masking my struggles and blending in. When I didn’t, I suffered abuse, bullying and violence. It is not a compliment to say “you don’t look Autistic” to someone who has had to change everything about themselves and act more normal for survival. You might have the best of intentions and truly believe you are complimenting someone by saying it or perhaps even encouraging them but for me, it is an insult and many other Autistic people feel the same way.
For me personally, it feels like you are challenging whether I have it or not. Or telling me my Autism is mild which is another thing I am absolutely sick of hearing from people who hardly even know me & even people who meet me for the first time. Quite a lot of people judge others based solely on appearance and what people are wearing or if they manage to smile on that day or make eye contact. I learned about social things from TV and Films because in school and other social situations I was always either in meltdown or survival mode.
The few outfits I wear and feel confident in are ones that my NT sister has shown me fit together. I can’t make sense of what to wear and what matches and I have received nasty remarks from people in the past due to that. I tend to wear the same colours and the same types of clothes because they literally are all that I know. Wearing something that doesn’t feel comfortable is actually terrifying and incredibly distracting to the point of not being able to think straight at all.
Most of my clothes are green because someone once told me I suited that colour. I never know what suits me and my perceptions are very confusing, to say the least. I have had lots of compliments in my life but none have ever built self-esteem because Autism and Trauma combined drain it out of me.
I rely heavily on the few people close to me and this is a terrifying feeling and yet one I must experience because I often can’t rely on my own perceptions. No matter how hard I try to do things it never ever feels good enough. I was told by my sister and her mates years ago that if I wanted friends or a boyfriend that I would need to have a tan because apparently, that was essential to have those things.
I went through a phase of wearing fake tan and it stressed me out to the point of tears nearly every morning before I was diagnosed Autistic. Autism makes me incredibly self-aware and hard on myself. Every-time I was standing in a different light I would look at the tan and it would seem different. Living in a rainy city everywhere I went the rain would leave me patchy and I couldn’t even think straight or feel comfortable until I got home and washed it all off. I was trying to be normal and fit in with everyone else by wearing it but all it bought me was stress. It wasn’t until I was diagnosed Autistic and I had met my Fiancé who loves me for who I am that I realized I didn’t need a fake tan to be human and I decided it wasn’t worth the hassle.
What Others Don’t See
Autism does not go away and coping mechanism can be taught. I am attending CBT and doing everything within my power to help myself but good and bad days are something that affects everyone. A bad day with Autism for me personally feels like the difference between life and death. Everything is intensified and terrifying and I know that my Childhood traumas inflate that but I also know that some people deal better with traumas than I am dealing with mine. I know that my perceptions caused by Autism and Social struggles make everything much worse. I always feel like an alien or someone in a different country that doesn't speak the language and doesn't have a translator,
I have always had more bad days than good ones and most of my life is spent in states of high anxiety and stress. Even what should be the happiest moments always have clouds looming over them. My mindset is always just one step from the edge of a metaphorical cliff. I could compare it to dominoes or a built-up Jenga tower before a gust of wind comes along and it is not through choice. I hate feeling this way and I want to be happy for the people I love as well as for myself.
A few people shame me for still being too sensitive and because I still get upset that I was abused as a child. I am fighting every day to see the silver lining and I struggle with the littlest of things. I can’t tie my own shoes at all and it’s extremely difficult to button clothes up. I struggle to brush my teeth but I still try my best every day and night. No matter how hard and consistently I try I can’t get them in optimal condition. These things are difficult for me due to issues with weakness in my wrists and problems with organization and time management. I can take hours to do something like brushing my hair because I am constantly battling my mind to try and stay focused on the task at hand and I find it very hard to brush it in a way that makes it tidy. As a result, I nearly always wear my hair up now and I really only wear it down if my sister straightens it for me. Or if it is half up and down because then it makes it more manageable for me. Things like making a bed and washing dishes are difficult for me.
Visual Cues
I need visual cues to prompt me to do things and with the support of a wonderful OT following my Autism Diagnosis I now know that and I have used that knowledge to help me lose weight. I use to be over 19 stone and I now weigh 9 stone 2. Things don’t stay in my brain and I literally need reminders popping up on my phone to trigger reactions and to process things I need written words. I have separate food cupboards as visual reminders. One has healthy foods and the other unhealthy snacks. I also get my Fiancé to put foods that I might get too carried away eating up so high that I can’t reach them and have to ask him to lift down for me. This gives me time to process if I really want the food or not and I make use of apps to track my calories.
People speak to me and think I am understanding them and they have no clue that I get so little of what they say. I smile a lot and that seems to work and I have polite responses built in. What I say to people is hardly ever what I actually want to say because I can’t process fast enough in the moment. Frustration caused by this leads me to meltdown and no one ever sees them because I wait until I get home.
I have cried on numerous occasions in supermarkets and I hide it well. My dreams tend to show me the effects everyday situations are having on my psych and I often have dreams of doing something like grocery shopping one minute and being on my hands and knees crying hysterically on the floor the next. No one sees it but that is what I contain when I am in those situations and I am completely overwhelmed by the environment.
I am trying my best to lead a normal life with very unstable emotions and massive trust issues. I look normal because I act normal but acting normal and being normal are not the same thing. In Primary School I got bullied really badly and a couple of girls in the class stole my coat. When I finally couldn’t take it anymore, I was punished and had to leave. I went through years quite a while after that obsessed with wearing coats and I would never take them off. It didn’t matter whether it was warm or cold I had to have my coat.
Unsteady Ground
I clutch to my handbag like Dobby the house-elf would to a sock or like Golem to the ring from Lord of the Rings. Every-time I leave the Dentist I leave clinging a piece of tissue that has been given to me with an eagle grip. In that same School, I was slapped on a number of occasions and yelled at by an older and impatient teacher who assumed that my difficulties caused by Autism were me just being stubborn. In nursery I was isolated and locked in a room all by myself after what I now know was a meltdown. Members of my own family refused to mind me because they were afraid, they wouldn’t know how to handle me. Often people with Autism have been rejected so much they can’t bear to take any more chances because their hearts are already in absolute bits from all of those who have rejected and isolated them before. In Secondary, I moved a lot and in Primary I did too and it was always due to either severe bullying or isolation. In a few of the different schools I had one or two people who I think liked me but the amount who didn’t outweighed the ones who did astronomically and they slowly used intimidation, name-calling, violence from both boys and girls, threats, stares, glares and even making me doubt the few people I did trust by telling me they didn’t like me.
People don’t know that their conversations are hard for me to perceive and can literally lead to weeks, months and sometimes years of emotional torture for me because my brain tries so hard to understand what it can’t. They don’t know because I don’t tell and I am always trying to make others happy and as comfortable as possible.
Sensory Overload
I am forever dimming lights and closing blinds to try to prevent sensory overload whilst I am at home and when I am outside, I can’t even do that. I also have restrictive, repetitive thought patterns and inflexible thinking caused by my Autism.
Things People Take for Granted
Autism is affecting many essential parts of my life. I am struggling just to do many of the things that people take for granted on a daily basis and it doesn’t stop it from being my reality if you don’t understand it or deny that it exists. I feel sad for other autistic people who do have those outward signs because I know they are also being judged by ignorant people. I am also sad for myself because I have suffered for being Autistic all of my life.
When my parents had excessive anxiety about what was wrong with me that affected me too. I was always to blame for social errors that were caused by a disability I didn’t even know I have and whilst I know there is those who love to debate whether Autism is actually a disability for me it is. It affects everyone differently and that is why some people cope better than others. Mine looks mild because I make a massive effort to appear normal but I do not experience it mildly. That will without a doubt be the case with a lot of autistic people because it's normal to want to be normal and fit in but that need to fit in hides a lot of suffering.
Be Gentle
I want to add to this part of my answer and ask people to be aware that “appears” is the word that is most appropriate when you look at someone with any kind of invisible disability. How someone appears to be coping is often very different from how they really are coping.
Autistics often mask and, in my case, only those close to me see how troubling autism actually is for me. After an insensitive interaction with someone who said: “I don’t look autistic.” I came home incredibly frustrated and had a severe meltdown. I cried until I was physically exhausted and spent the next three weeks according to my fiancé crying and saying “I don’t want to be here.” When my mood gets that low it is extremely difficult to pull myself out of it and my linking thoughts keep dragging me back down. I was left to struggle without a diagnosis for 26 years and here was someone saying “you don’t look autistic.”
Perfectionism – Mistake – Meltdown
A similar thing happened after failing to use a shop and scan service properly. Either I or my fiancé forgot to scan one item and when we got to the checkout the person there checked and seen one thing missing. I felt a meltdown coming and I was starting to feel tears but I did my best to contain it and when I got home, I broke down. My brain won’t let me accept anything that it feels is less than perfect and this means I have to spend hours on things that should take only minutes to complete.
The perfectionism caused by my autism makes me extremely hard on myself and getting just one thing wrong feels like the end of the world. I am always on edge out in the world and trying my best to just be normal and act as NT as possible. When I get something wrong it feels like everyone is zooming in on my differences. it’s honestly the most horrible and scary feeling and I wish I never had to feel that way. For me, different definitely links in my brain as similar to wrong and so if I get something wrong, I feel different. Then it triggers a seemingly never-ending spiral of feelings such as pain, embarrassment, fear, alienation and I get flashbacks to all the times I felt those things before. It has a massive effect on my mental health and my emotions are rarely calm or balanced. When something hurts it really hurts to the extremes. It can take me years sometimes to recover from insensitive remarks and some I still haven’t fully recovered from and probably never will.
Comparison and Autism
Also, comparison based on someone that apparently copes better with their autism than someone else is incredibly hurtful and insensitive. I have heard of people who don’t have autism telling people they are overreacting or to just suck it up basically. Those people are invalidating how bad autism really is for that person. How can you do that? Often even people with autism don’t fully understand it themselves. I am still trying to come to terms with the massive effect mine is having on my quality of life.
Invalidation affects mental health and it’s very hard to live with being treated like a liar and made to feel like you have to explain autism to the ignorant people of the world. I truly believe everyone who has actually been diagnosed or who does have it but is yet to be diagnosed is doing the best they can.
Please remember that autism is a spectrum and everyone has a different “bag of problems” caused by it. Just one of the things that come from autism can be difficult to live with depending on what it is. When you are a diagnosed autistic you are being affected by a lot of different things and you are diagnosed because it is having a disabling effect on your life.
Medical History
I had severe fits as a child and was on medication for epilepsy for a long time until doctors decided it was febrile convulsions. Within a short period of me receiving vaccines, I had swelling and a rash and then fits followed. I would like to state here that I am not anti-vaccine and lots of people have them and are fine. My mum was told that there was probably something that my family were sensitive to inside them. All of my family have disabilities except one person and some are related to mental health. I don’t know what happened and I have always been trying to make sense of it all hence why I got permission to view my files.
Doctors told my parents I would never walk or talk. My parents and doctors were at loggerheads with each other and it came to a point where my parents threatened to sue. I did not and still do not want to sue anyone but I do feel the doctors let me down. As a child, I had a buggy which was made to support my weak bones and I was in that a few years of my childhood. I learned to walk and talk and learned ways to hide my disabilities. Hidden does not mean gone it means I deal with them and you don’t have to see them or be made uncomfortable by them. There was suggestion then that I might have mild cerebral palsy but since then I have been told that everything is coming from autism.
I still get intense pain in my legs and feet. I gained weight after being given steroids due to asthma attacks. After the doctor who prescribed me them got angry at me for gaining weight and told me I would get bullied. I did get bullied and that only led to further pain and worsening of a depression that has existed nearly as long as I have.
They held a meeting including doctors, psychiatrists, paediatricians and my headmaster. My parents were only allowed to ask three questions and one of the questions my mum told me about was that they asked if was the birth or the vaccines. I am told that one of the doctors got up and walked out of the room after saying it wasn’t the birth. They said I had eight or nine different disabilities and that my parents would probably never get a name for them all or get to the bottom of what caused them. 26 years later I am diagnosed autistic I am so thankful for the wonderful people who have supported me since that point. One of them said I was neglected and I do wonder what my life would have been like had the help came sooner.
I feel that I was neglected and I think the doctors denied me diagnosis to protect themselves from being sued when they had a duty of care to me their patient. I am not someone who thinks money is the answer to anything really. I don’t agree with my parents that suing anyone was a legit answer to the problem because it won’t change anything.
I got my medical files because I wanted to see for myself and have shredded them all since because my parents wanted to use them to sue. I haven’t mentioned anything from them here. Only what I have been told by my parents in regards to the situation.
I remember sitting out in the waiting room and hearing my mother crying hysterically about what was wrong with her daughter and I didn’t even know what was wrong with me. That has a lasting impact to make so many people sad and not even want to but to just have it happen as a consequence of being alive. I always wanted to make people happy but they wanted me to be normal and I am not and can’t ever be.
Losing People, I Care About
I have lost every friend I ever had due to miscommunications and problems with my perception meaning I can’t fix it when things go wrong. Also due to complete burnout because I just can’t keep up with friendships and social expectations when things like texting and small talk do not occur to me. I care deeply about people and would do anything to help someone but all of the social communication and trying to work out what people mean and still never being entirely sure is exhausting. I still replay conversations in my head that happened years ago and it's not through choice. My mind just ruminates on them because the situations were never resolved. My expressions also never match my feelings and I have given people the wrong impression based on those alone. This has led to people wrongly assuming I am afraid of them and even me being stalked by men I didn’t know and even ones who were much older than I was then.
I learned to hide anything that made me stand out to others just so that I wouldn’t feel the devastating pain of being rejected for my differences. I was rejected, bullied and isolated all of my life even before I had a diagnosis and this was because I was different. People would come up to me and ask me “what is wrong with you.” I couldn’t answer them because I didn’t know but they knew something was different. I had to move many Schools and Medical professionals decided that I was too intelligent and that I looked too normal to be in a school for disabled children in spite of the fact that I was suffering inside.
Too Late
I finally was referred to a disabled school when my schooling was almost over but this affected my education enormously. In two of these schools, the headmasters were aware that I was being bullied and one even watched someone throw things at me and did absolutely nothing about it. The other denied bullying could ever happen in his school and when a psychologist came in to assess me, they told my parents that I was probably the most bullied child in the school.
Autism is debated so much by people who don’t even understand it and the truth is a lot of people who actually do have it are still wrecking their brains trying to understand it themselves.
I know this is an extremely long-winded answer but I have to answer things to the best of my ability and I think that by giving you the full picture you can see why you should never say invalidating things to a person with autism because often no matter what stage in their life they have been diagnosed they are fighting multiple battles on a daily basis and some of them are caused by the ignorance shown by others.

1 comment:

  1. I can't believe people would say these things. Sometimes people can be so insensitive. Sorry you have to hear this!



I welcome comments and questions and hope you have enjoyed reading my blog. Thank you