Explaining autism - Mental illness vs disability?

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Hello everyone,

First of all - thanks to everyone who takes time to read this lengthy rant…

I am 23 years old and I’m currently seeking to get a diagnosis for an autism spectrum disorder.
I have been struggling with depression and anxiety for most of my life now, both of which are diagnosed and for which I am also taking meds. Nonetheless, even during „good“ times (no depression symptoms, no anxiety), there are so many aspects of life that I struggle with… and when I finally read about autism, all of that suddenly seemed to make sense. Now, I don’t want to make the exact reasons for my diagnosis the main topic of this as I could probably talk on and on about that (although I’d welcome to talk about this too) but rather this:

My mother is usually the first person I talk to when I struggle with something and she has been extremely supportive about my mental health problems in the past, having struggled with them herself. So, when I told her about my suspicions of being on the spectrum a month ago, she listened attentively and without any negative judgement. I was really nervous about this as it is obviously a big deal - getting a diagnosis could change my life.

Now, when I told her about ASD symptoms, she kept telling me „Oh, but everyone feels like that sometimes! No need for you to feel bad about it! I went through the same stuff!“… yeah, that dreaded speech. I’m aware that there are millions of kids in this world who hate school, people who have a hard time making friends, people who are scared of changes/new places and might develop anxiety because of that… But when all those „problems“ are accumulating like they are doing for me, when taking medication only helps to some extent, when despite the frequent therapies that I went through (I have been in and out of therapy since I was 8 years old!) some things simply do not change, it’s not „something that everyone sometimes has“. I knew she only said this to make me feel better, to make me see that other people struggle too, and to make me keep fighting against my struggles - but this simply isn’t the same.
As this was very early after my finding out about autism, I didn’t want to further elaborate on that topic on that day, but rather pick it up again later…

Cute to this evening, when I told her I wouldn’t be able to keep an appointment on coming Monday up because school is currently draining all of my energies. To this, she only responded with an eye roll. When I asked her what exactly that reaction meant, I was told how difficult I am (not that I wasn’t aware of that already), that I’d currently only be moving backwards and I should not relax based on a suspected diagnosis.

I’m currently undergoing a vocational training for which I have to visit a vocational school and this is the first time in about four years that I’m having a regular, daily schedule after finishing high school and after dropping out of university last year.
To focus on my studies, I scaled down my part-time job to the absolute minimum. I also cancel any other appointments that aren’t absolutely necessary. I come home every day dead tired, heavily sensory overloaded to the point where I literally can only stare at the ceiling for the rest of the day.
However, ever since August, I had to take only one „mental health day“ off, which is a huge deal for me. I am on top of the class and am doing extremely well to the point where my lecturers even give me additional work to keep up with my learning speed. I am focusing all of my energy to get this degree to be able to provide for myself in the future somehow. This is taking me EVERYTHING. And yet, here I am being told I’m doing worse than ever...

As supportive as my mother is, she can also be very fixed in her judgements with no room for adaptions whatsoever. It’s a strange feeling because I know that she’ll support me no matter what, but yet I’m very hurt by those words... and I worry that I can’t make her understand the differences between „everyone feels like this sometimes/it's just your anxiety“ and autism even with getting a diagnosis. I’m also afraid that I’ll get the same reaction as soon as I tell my other family members.

Autism is a disability - you can’t tell someone who is paraplegic that they should simply work harder on trying to walk because they do have legs, the same way you can’t tell an autistic person to simply go ahead and make friends because, after all, people like you. But I feel like telling her this would only make me seem insolent in her eyes.

So, my question is: Does anyone have an idea on how to carefully approach this subject in the future?

I think the root of the problem is the topic of mental illness vs disability. How can I make someone understand that autism is a disability with disadvantages that will never go away, that I can only learn better coping mechanisms to deal with that, and that it’s not a characteristic or laziness or whatever on my side? Yes, major depressive episodes, for example, require a lot of perseverance and work on the side of the patient to get out of again, that is something I have experienced and fought myself in the past. But I am NOT relaxing on the diagnosis „autism“ - but with now probably knowing what is simply inherent to me and what is not, I try to direct my energy more to my strengths and where I know it’ll actually lead to something positive, and accept the things I struggle with as such without beating myself up all the time about not having any friends or whatever.

Firstly, Autism is not a "Mental Illness" any more than is color-blindness or tone-deafness. It is a developmental disorder.

Second, it is certainly an obstacle. For some, this obstacle is insurmountable. For others, not so much. For still others, it enhances their life-experience once they fully understand how it affects their individual thought processes and general attitude.

Third, autism is a multi-dimensional "spectrum" disorders. All of the various signs of autism can vary independently of each other from person to person. One person may be clumsy, yet have a keen eye for detail. Another may have issues with strong lights, sounds, and smells, yet be as graceful as a cat. Still another may seem relatively "normal" to the casual observer, but still have trouble recognizing non-verbal cues regarding another person's emotions.

Finally (and this should have been first), welcome aboard!

Thank you for the welcome! I'll write up a proper introduction post sometime soon, hopefully.

I have always been well aware that my "depression-downs" have been something entirely different than my autistic traits, even before I knew about autism. The first can leave (for a while), the second don't. I just always struggled with explaining that as it seems so natural and logical to myself although it may confuse others - especially when you're having a hard time expressing your feelings in spoken words anyways (what a vicious cycle!). I close up quickly and suddenly can't seem to get my original point across anymore.
And when the opposite person only knows about mental illnesses like depression, I think they are prone to misjudge autistic traits as something that can be "therapied away" and when that doesn't happen, it seems as though you might somewhat neglect your personal growth, or whatever you want to call it. That is also what I have sometimes been accused of in therapy - my last therapist actually shouted at me when I told him I simply wasn't interested in making friends; if I didn't develop some kind of wish to do so, going to therapy would be needless anyway.

Trying to explain autism in a logical, step-by-step way seems like a good approach. I'll keep the three points and the clear examples you mentioned in mind while trying to explain myself in the future.

Hello and welcome. I am also learning. Learning about autism. Learning about myself. I am awaiting an assessment so I do not really know if I am on the spectrummof not. Either way, some areas in my life I am struggling in these days. Autism seems to make sense.... But something I will say with autism, is that (And I am assuming I may be on the spectrum here) one may go through life not really knowing what is going on... Knowing somehow one is different, but... Well... I had a few days of shock on this site where I discovered autistic trait after autistic trait that I had asumed was just part of my individual character. (So I now know I share traits. Does not mean that I have enough traits to be on the spectrum). For me, it is hard to tell what is what because I have had a very unique and individualistic upbringing to begin with. So, many of the traits I discovered I had always assumed that it was because of my upbringing.
I initially joined this site just after following a hunch where I had for most of my life trying to solve a medical issue. Doctors didn't seem to find out what it is. Half the issue is I could not explain it in ways to make other people understand. I believe I can now thanks to the tallented people on this site.
Now the issue I was dealing with I now believe are partial shutdowns which occasionally can develop into the odd shutdown. It was why I origionally joined to ask questions to see if I was right or not about the experience being an autistic shutdown. The rest of the traits (Apart from prosopragnosia (Faceblindness) I did not realize they were medical conditions. I assumed that they were just my unique character...

But I now ask myself "What is really me and what parts are traits of autism?" I really can't work things out!

Autism is never a "mental illness."

It sometimes manifests itself as a "disability."

Autism has many misconceptions

Tell them to read a book

Right there with you and I am twice your age (having an assessment now). My parents both say that. Infuriating. It will be interesting when my assessor calls one of them.

My NT dad says, "that's how it is for everyone". For him ---who is otherwise a nurturing person--- I have started saying, not to this degree and not this often. I have also started sharing some of my internal thoughts, so he can "see". (ya know, b/c NTs have very little Theory of Mind ---- that's a joke, since it's been previously applied to ASDs not "understanding" NTs, when it's in reverse also people.) When I started exploring my EF difficulties, my dad said "that's b/c you just don't want to do those things". That lit me up. He was taken about. Now I think I'd say: "Dad, I am so upset by that, would you do me the favor and google ASD and executive function and get back to me?"

My Aspie-like mom says "that's how it is for me". For her ---who was emotionally abusive--- I would like to say "What you think is normal is NOT NORMAL!! !! !" I'm not there yet and am open to suggestions myself. Mainly I need to establish healthy boundaries, which in same cases is taking a break from conversation.

I burnt myself out at your age A LOT, but muddled through (undiagnosed). I am glad you are scaling back - kudos to you!! !! I want to do it all, and sometimes I will knock it out of the park, but I have to know when to cut back and refill my tanks also.