Why labeling autistic people is so damaging

I’ve seen the different kinds of autism labeling. “Autistic people are egocentric and it makes it difficult for friends and family to be around them”, “High functioning”, “Low functioning”, “selfish”, “Intellectual disability”, “Repetitive behavior”, “Restricted interests”, etc. So you may be wondering, what is so damaging about these labels? Here are the reasons why.

It puts down autistic people’s struggles, labeling an autistic person’s stimming as “repetitive behavior” does not validate that the autistic person is trying to cope by stimming. It implies that there is something wrong with the autistic person. It causes an autistic person to feel bad about themselves, we already try so hard to cope and it can take so much work for an autistic person to be able to move forward and achieve goals, and to say an autistic person is “egocentric” is extremely hurtful.

A lot of time autistic people have too much empathy, we do not lack empathy. I have empathy and can feel the same feeling of empathy towards another person as others do. Another thing labels can do is cause an autistic person to lose their identity, their sense of purpose, and shutdown. I myself have gone through this recently. As in someone telling me that I’d be “Scared to death if they found a cure for autism”. It became so bad that I thought about deleting my blog.

Instead of labeling why not try to help autistic people, why not accept us as who we are? Many of us have strengths that the world needs. Temple Grandin mentions that many autistic’s work in Silicon Valley, if we didn’t have autistic people in the world, we probably would not have the technology and ideas we have today. Albert Einstein was autistic, and he made great contributions to society.

I’m tired of ableist remarks, I’m tired of hearing “You shouldn’t be proud to be autistic!” I’m tired of hearing the labels. And I’m tired of people trying to control my beliefs and saying I shouldn’t believe in neurodiversity. I believe in neurodiversity because I believe autistic people should be accepted, I believe that autistic people have been on earth longer than we think and that we are here for a reason. I do believe that some things need assistance such as supportive friends, treatment for anxiety, depression and other comorbid conditions that come with being autistic. But I do not believe that we should be using labels, I think we should ditch them!

Each label I will throw into the fire. I am not “High functioning”, “Low functioning”, or “Egocentric”. I do not have an “Intellectual disability”. I am who I am, and I’m proud of it! I’m proud of the goals I have achieved in life and I will continue to work towards those goals. I am #autisticandproudofit!

Labels damage autistic people, ditch the labels, autistic people deserve better. We are humans too! 

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The Painful truth about being an autistic adult.

The painful truth about being an autistic adult is that I struggle,

Others don’t understand how much I struggle, if I’m having ameltdown, it is considered to be a “Tantrum”, “Stop crying!”, “You can help it!” I plead with them “Please, just let me have space!” but I’m not allowed to leave the situation because it’s considered “Rude” and “You need to stay till the end”. Once I’m allowed to leave, I go up to my room and curl up into a ball and hyperventilate, all I can do is feel the anxiety taking over my body, and I have no control over it, it’s scary. My back becomes painfully sore from breathing so fast and so hard. My eyes turn red from all the crying, my throat becomes sore, and tears drip silently down my face.

I have to go to Costco. I’m not allowed to bring Nikki, my autism assistance dog because we are shopping and “She will get in the way”, “She’ll shed in the car”. (Nikki sheds but she does get brushed and does have baths). As I go into Costco I become overwhelmed by all the sensory stimuli, my vision starts to blur and zoom in and out, I start to feel that disconnected feeling. I am able to *tolerate* the trip, but it leaves me feeling anxious. All I could feel during the trip was being overwhelmed, all the people moving, carts rattling, bakery equipment beeping, checkout scanners beeping, people talking, all the TV’s with same settings playing, it’s all so overwhelming.

“Oh you’re high functioning”, my nephew he is much lower functioning then you”. I hate being labeled. I HATE it. I may appear to be “high functioning” in the view of Neurotypicals. But I’m not high functioning when I’m having severe anxiety, I’m not high functioning when I am in a meltdown from anxiety chemicals being too high, I am not high functioning when I am so overwhelmed by sensory stimuli that I have to retreat to a quiet spot.

When my little sister asks “What is autism” it’s explained in high functioning and low functioning terms.

When I try to explain that something hurts my ears, others laugh

When I say I have anxiety, I get “You don’t look like you are anxious”.

Sometimes when I am in a social situation I can’t talk, or I don’t know how to start small talk with someone. And I start feeling alone, but at the same time I don’t know how to fit into the social conversations.

The painful truth about being an autistic adult is that at times, you will struggle, at time you will feel terribly alone, but even though I go through this, I will not give up. I am stronger than the stigma surrounding autism. 

Emotional Memories and the People connected to it

It all started simple enough. I said “I am autistic” to someone who I thought I could trust. Everything started out fine, we all got along, then after a while things started to go downhill. When I rocked in my chair because stimming feels good and helped me cope with my anxiety before I got my autism assistance dog, She said to me “Do we need to go to a mental hospital”, I didn’t understand a situation and because of my black and white thinking and social anxiety I didn’t show her a project because she had said to bring it, but didn’t mention it and kept talking with the other adults. I thought “I’d better not interrupt” and kept quiet. When she realized I hadn’t shown her the project, she became angry. She said “You’re using your autism/disability as an excuse.” This hurt. I didn’t understand.

The downhill spiral continued as I would talk about my sensory struggles and how tiring it was to bear with them. She acted irritated, “Stop complaining about your issues!” I learned to not complain and hide my discomfort. Even if my ears were ringing with pain. Her daughter also became more toxic as time went on, to the point of whispering very loudly “Stop shaking your head!” when I was having a motor tic moment when a camara flash went off. The flow of laughter coming from her mouth and other’s when I startled at a loud noise, not warned before it would happen by others, I jumped. “You sprayed dust all over your dog!” (This was when I was in dog 4H) “Hahahahah”

She kept criticizing me, and her daughter joined in. “You’re not having a panic attack!” “Sit up!” she criticized me so much I had anxiety before almost every class, what was she going to criticize me about today? Was I going to get in trouble? I want to get out of here. Finally my classes with her ended. I was so relieved to get out of that situation. Then the text came, she wanted me to come help groom some of her animals. I tried saying I didn’t want to go, but others insisted. “We already told her you would like to do that” “You need to learn to work out issues between you and others”.

As I prepared to leave, I measured my HR and It was climbing fast, 100 bpm, 110 bpm, 120 bpm, a sense of doom surrounded me, I started having tingling in my hands and feet, and then that slow tense feeling came over me, I started feeling sick to my stomach. As I climbed into the car, that feeling continued. When I was dropped off, she greeted me “Hello! How are you?” I stood there frozen, not knowing what to say. I managed a very quiet “Hi”. I started shaking then and felt like I was dying, she sensed my anxiety and asked “What’s wrong?” I said “I’m anxious” and she asked “Why” and I replied “Because of something in the past”. She asked “What in the past?” and I said “In the past you said I was using my disability as an excuse”. She expression changed, her eyes narrowed, suddenly I could feel the negative energy. She replied “I never said that, I’m surprised at your attitude, I guess you don’t want to help.” She asked why I came and I said “Because others wanted me too” She said “Well thanks! I haven’t talked to you in months!” Well maybe I hadn’t talked to her because I was busy making new friendships and maybe it was because I didn’t want to because of memories of the past. The car came and I went home, I cried all the way home. Others got upset with me “You need to get over this!!” All I could do was shake and cry. It took the rest of the day to recover from that. Since then I am not in contact with her or her daughter anymore. Any time I see her out in public I have a feeling of complete anxiety over my body, my heart starts racing, my muscles tense up, and I want to hide. I was at a voting poll and she was there, I was behind the cardboard at the desk filling out my voting ballot, I heard her voice, my heart started pounding, and my stomach tightened, as she passed me I felt tension all over. Once I was done with the ballot I quickly put it through the machine and searched for the nearest exit. Once I was out I felt somewhat better.

To sum this up, once an autistic person has had negative memories, they never go away. And if enough damage is done, it will cause fear and mistrust of others. Be gentle with autistic people, we are trying.

Service dog training: It’s harder than I thought it would be.

Sorry I haven’t written in a while. Here goes nothing….

Service dog training, it seems easy right? You train the dog, take them out into public, and they slowly grow into a good service dog. WRONG. It’s really hard, harder than I ever imagined. There will always be problems with public access such as people not knowing the laws under the ADA, things such as “It will be too long of a car ride” or “She’ll be a distraction to everyone”. Also you can have big fails too. In my last class Nikki got up during art. So now I can’t bring her back, at least not for a while.

There is also behaviour issues such as barking, chewing, whining, and other things that I did not expect. In public Nikki is usually very well behaved. In her first trip to Walmart she had NO accidents and no barking or whining! But at home it’s a different story. I’m trying a Kong toy and some other things to help mentally stimulate her more so that she will hopefully do this behaviours less.

There are many tasks to train also, and you cannot just “skip” a week of doing them. They need to be practiced every day at the most, and every other day at the least. And sometimes your service dog “forgets” a task and you have to re-teach it to him or her. Nikki forgot her “touch” when I fake startle during training, and I had to re-teach it to her. You may have to repeat a task 10-15 times just to get it right. You have to be consistent and persistent, but in a nice way. I clicker train Nikki, because that is how she was trained to do some things through the center before I got her.

Some day I hope that Nikki becomes a well-behaved Service dog. Both at home and in public. And I hope that I won’t fail again, but I’m pretty sure we will have fails along the way. I just have to press through the good and the bad, the beautiful and ugly, the successes and failures. One day we will be a Pawsome team. For now I gotta keep my head up, even if there are tears and bad days.

Note: My Instagram account is private now. This is for personal reasons. I’m sorry if this offends anyone.