Devastating Comment

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There have been a lot of threads lately about functioning levels of Autism. I really appreciate these threads because it is so important that not only we as community, but people outside of our community understand that part of what it means to have a developmental disability is that you can have so many varying levels of functioning. They can change so dramatically and every area of your life can have different levels of functioning at different times.

I had to write this today because I am feeling very devastated. One thing about me which is extremely rare, is that I do not have a public persona. That means that I do not have the ability to not take things very personally. I am extremely deeply affected to the core by things people to say to me even if they are complete strangers. I feel them as powerfully as I would if the most intimate person in my life were to say them to me. I do not have the ability to brush things off, deflect them, or dampen or soften them nor do I have the ability to let them go, so they will produce PTSD for the rest of my life. This is just part of my reality, part of my normal and part of what I live with on a day to day basis all of my life.

But today I wanted to share a particularly difficult comment that someone told me today. I think it really hurt even more because of whom it came from. I was applying for help with my gas bill today. I have a part time job but because of the particulars of my Autism and my other disabilities, I am only able to gross about $300 a month right now. When I was in the application process, the woman asked me a bunch of questions. I know that she meant well and that she has to ask these questions but I explained to her that I get asked these questions ALL THE TIME by EVERYONE and I literally could not take it anymore. She was asking me if I had tried this job or that job. I have had about 53 jobs in 15 years. I also got through mainstream school all the way to almost finishing university without a single accommodation. There are not a lot of jobs that I have not tried. Then she told me that I should focus on my strengths and not my weaknesses and she asked me if I had ever made a list of what I can do. I just wanted to reach over the table and slap her. I am a 51 year old Autistic person who was diagnosed three and a half years ago and who never had an intervention or support ever in my entire life. I don't have a public persona, I have Misophonia and genetic hypertonia. If I did not consciously focus on my strengths every single day of my entire life I would not have lived to be this age. I am so sick and tired of people asking me these questions like these are things I never thought of or tried in the past 51 years.

But then she said something that pretty much devastated me. She said that she has an Autistic grandson and he is much more "low functioning" than I am. So she felt that I should be able to do the things that basically any nt can do. When I told her that there are times when my functioning levels are so low that they are much lower than many people who are obviously "low functioning," she said, how dare I insult her by saying that I can be low functioning, basically putting myself in the same category as her grandson. Then she argued with me saying that I don't have the right to say that I can be low functioning at times or to even think that I can be because I speak and communicate so well. She said how dare I compare myself to someone like her grandson who can't communicate as well.

I cannot tell you how deeply her comments hurt me. I had to spend the next twenty minutes giving her examples of things that happen to me and the different reasons why I lose jobs. After spending all that time convincing her that I really do have major issues, she finally understood and agreed with me that I really am completely unemployable.

She even at first had the nerve to tell me that because I can be certified as a lifeguard and because I am capable of saving someone, that means that I should be able to work in any pool. Well the fact is that I can't work at any pool. Where I work now, I cannot even be used to guard the outdoor pool because of all of the sensory overload. I can only guard the indoor pools and only during times when they are not crowded unless it's swim team practice or lap swim. I am so disgusted and sick and tired of people making assumptions about me and holding me to the expectations of their assumptions. And for this to come from someone like her, who has an Autistic relative, she should know better. I cannot even express how hurt I am by her comments.

I'm sorry this happened to you. Unsolicited advice can be very distressing, and all the more so from someone who hasn't come within ten miles of walking in your shoes. I hope that you have a better day tomorrow.

Quote:
Unsolicited advice is the junk mail of life.
Bernard Williams

I'm sorry she said that. That's the problem with functioning labels. They are often used to disregard the capabilities of those labeled low-functioning, and the struggles of those labeled high-functioning. She may think she's standing up for her grandson, but speaking for him doesn't help anyone. Unfortunately, many people do have this inaccurate black-and-white view of autism.

Thank you so much for these posts. I really feel support here. It's nice to have this when the supports in real life are so few and far between.

I'm astounded not as much by this woman's terrible treatment of you but by your amazing patience and perseverence to endure her attitude and prevail. I am quite sure I would have been in tears, had a meltdown, or just left and came again another day. You have given someone the opportunity to see life more clearly from your perspective and hopefully she has a bit more understanding of the variation in the expression of autism.
Thank you!

Thank you so much Beady. I was really on the verge of a massive reaction when talking to her and I had to clench the side of her desk with all my might to not explode. I also cried quite a bit and actually had a meltdown when I left once I was alone. But I also hope that she has learned something and that she will never do that to anyone again.

SkiBum, heartfelt sorrow at what you endured.

I really enjoy your posts and remember seeing them two years ago.

I think you are very cool.

Wow, skibum, you did a lot right in this interview. One thing you might consider changing - if I may offer unsolicited advice, and only if you like the advice - is not hold off the meltdown until AFTERWARD, but consider doing it DURING.

I had an appointment with a dermatologist one time who told me that a procedure was not painful. I have had that procedure done before and I know darn well it is painful. I felt close to tears - after a draining MD appointment earlier in the same day - and I thought, "Why should I shield this jerk from the results of his insensitivity?" So I let the tears flow, right in front of him. He was very flustered, as well he should have been.

Anyway, I hope you are beginning to feel better.

i am so sorry you went through. you shouldn't have to 'prove' your diagnosis / how you feel to anyone!!
i dont know what's worse - being treated patronisingly or being treated as everyone else / expected to be like everyone else? it seems that if you are not "obviously" low functioning people will just question your claims that you struggle.

I've had the same experience with my GP (british for doctor) when i approached him for a diagnosis. He kept trying to make me say that I was not that bad and, therefore, not in need of a referral. He kept saying things like "you seem to function well".

That is great advice Bea. Thank you. I have to get to a point where I actually can do that because it would be so much healthier. I have just started getting to where I am comfortable stimming in public and sometimes when I do have a meltdown in public, I still get very embarrassed and some people treat me badly when it happens but I have noticed that there I sometimes when I just don't care what people think. But you are right. That would have been very powerful for her.

Because I grew up in a time where no one knew about HFA, I grew up being very severely punished for meltdowns or any Autistic behavior because no one understood and everyone thought I was having tantrums and just being a badly behaved child. So I had to learn to hold off my neurological responses until I was safely hidden in a private place. So I think it would be very good for me to allow myself to do that. Thank you.

Gallia, that is so horrible to have that kind of response from a doctor. I am sorry you went through that. It is a very difficult place to be in when you struggle so much but no one will believe you. Hopefully people will grow in their understanding so that future generations won't have to go through this. Thank you for sharing your experience.

That was incredibly unprofessional of her. And she sounds ignorant and prejudiced. To be honest I was ignorant and prejudiced about autism in my earlier days on this forum and unintentionally upset people over it a few times. It took me time to get someone being autistic but not being autistic the way I am autistic. I have even come to realize that in a way I am better off than others because I will never be subjected to what you experienced. You have had to endure agonies and struggles that I will always be shielded from. So yeah hopefully she learned something.