"You can't be autistic, you can speak/write/have a job"

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This is getting to be my new LEAST favorite phrase, one guaranteed to tip me into teeth-grinding rage:

"You can't be autistic, you can speak, write, or have a job."

Sorry for the big whine-fest, I just need to rant:

I'm obviously very late to the conversation, since I was diagnosed only last summer at the age of 49. Prior to that, my differences were always chalked up to my being geeky smart if the difference was a good thing (like my grades). If the difference was a behavior problem, it was attributed to my being unwilling to really try hard enough to get along with people, not annoy people so they would bully me, behave better, be more polite, be happier, work more efficiently, be more organized, or understand what people REALLY meant. Every failing was my fault: I was too lazy, too different, too dramatic, too insensitive. Anything bad that happened was my fault: I must have said something to make the kids mad enough to bully me. If I did something well, everyone praised me. If I did something bad, I was told to stop acting bad, even if I didn't know how. There is an old saying: success has many fathers; failure is an orphan.

I feel like my whole life has been one in which I've been left to fend for myself, and the anger is really hitting me right now. My parents were middle-class intellectual near-geniuses who seemed to be in permanent denial that any child of theirs could need serious help. Not only was I autistic, but my brothers were learning-disabled and got hooked on drugs in junior high.

When I was six years old, my parents were free-range parents before the movement existed. They let me roam around our neighborhood by myself. I got kidnaped from a nearby park and molested. The police sent a uniformed officer that looked like a teenager to take my statement. That was the last we heard of it. My dad called up the police later to find out if they were working on it, and was told to "stay out of it, it was taken care of." The message I heard was, "We don't care. You don't matter. You're on you're own."

When I was being bullied by classmates at age 8, because I spoke funny, was socially awkward, and was clumsy, Mom asked me, "what did you say to them to make them want to bully you? Just ignore them." The message I heard was, "I'm busy. I don't believe you. You brought this on yourself. You're on you're own."

Every time I needed help, with homework, dealing with school, applying to colleges, I was left to deal with it myself. They were too busy with their careers, their charities, their love affairs, their open marriage. I might have done better to be raised by wolves.

When I finally got diagnosed as autistic, after 30 years of therapy, mom showed initial interest, and got a bunch of books to read about it. She read about 3 chapters, handed the books back to me, and went back to her charities. Now she can't remember anything odd about my childhood. This from the woman that can give you the names and biographies of all her ancestors back to 1635. The message I heard was, "I'm busy, and you don't rate as high as these other things. You're on you're own."

Now I am trying to find some kind of therapy that will actually help more than the useless cognitive based therapy talking cure--something tailored for adults with autism--social skills classes? Occupational therapy? ABA? The attempts so far have been unsuccessful.

1st psychiatrist laughed in my face when i told her I thought I might be autistic (this was before my diagnosis), i guess because I was too verbal.

2nd psychiatrist grinned and said that there was no test for adults, and if there was, it would not be covered by my insurance (I proved her wrong on both counts).

Therapist told me i couldn't have autism because I didn't talk the way her other two autistic patients did.

3rd psychiatrist--well i didn't get to talk to him because his receptionist became extremely hostile when I told him I was diagnosed with adult autism. He proceeded to give me a series of confusing instructions on how to get into their program, and yelled the same instructions louder when I asked him to explain them. I hear that same, same old message: "You're not good enough. Don't bother us. You're on you're own."

I'm getting very angry and discouraged. Just because I hold a job does not mean I did not have to struggle to get here. They were not there when my third grade teacher called my mom to tell her I was ret*d, because my speech was so bad she couldn't understand me. They were not there for the bullying, the faux pas that lost me friends, washing out of graduate school, the failed job interviews, the layoffs, the being passed over for promotions, the times some person in the service industry screamed at me because I couldn't understand what they meant.

I count too. I am disabled too. I need help too. But people talk to me like I don't count.

That stems from the pre-DSM IV conception of autism--which, unfortunately, is still prevalent among the general population at large.

According to that conception, Rain Man is very high-functioning. Because he can speak, and he has savant abilities.

Yeah, the feeling I get is, if I'm not gnawing on the furniture or currently beating my head against the wall, I'm fine and don't need help. The fact that I sometimes feel suicidal every day for months at a stretch is something I should just shake off by myself, apparently.

Yep.....that's the way it is in a lot of America. It's possible that other "Western" countries are a bit more "advanced" in this area.

People are just stuck in their outmoded conceptions of things for the most part.

I understand your frustration at least fairly well.

I think that is a big, fat crock.

Also, if you have a job, be extraordinarily careful when revealing your asperger's/autism to management or HR. It can have dire consequences because of their lack of knowledge on the disorder.

You better believe it!

Ignorance is rampant within mainstream American employment.

I'm glad to finally find out I'm not alone in these types of feelings. That could have been written about me.

FWIW...

My husband was 50 when diagnosed. Now some people have a point that being diagnosed as an adult is kind of worthless. He had to because he was in the middle of a law suit with his employer.

Worthless in as there really aren't any therapies for very high functioning Autistic adults. You live in Maryland, you might have a better shot than us. We live in the midwest. There is literally NOTHING for my husband at his age. OT/PT/Speech/life skills....*crickets* Everyone in those occupations work strictly with pediatric populations PERIOD around here. We can't get anyone even if we private pay.

They might work with 19 year old if they are still high school.

So you see a shrink for the anxiety and depression and sort of muddle through life the best you can.

I'm 51. I understand your rage at your parents. My husband has enough rage for his parents to fill Jupiter. His mother was diagnosed with Autism at 70, so a lot of the "not being there" now fell into place. (originally the doctors thought she was getting dementia).

You can't compare then to the social standards now. We were all free range kids in the 70s. I was raped by a teacher in high school. Nothing came of it because in 1982, rape=scary creep jumping you in an alley. I more or less got told I was asking for it. Even if your parents want to do something, there was nothing. You might of got an ADHD diagnosis. Aspergers wasn't until 1994, and only young children were diagnosed. You literally had to be wearing diapers and a helmet to get an autism diagnosis when we were in school.

It was just a totally different world back them. My parents didn't give a rat's ass about my feelings, or self esteem (I don't think they even had the word back then) or what kid crap bully mayhem happened at school. That started during the 1990s, and really didn't get rolling until 2000. All the supports kids have now are fairly recent.

My husband's parents are in their late 70s. His diagnosis was a shrug. His mom literally said on his intake form that there were no issues in his childhood. Mom's social skills aren't the best dealing with humanity, and she misses a good 80% of non verbal stuff going on. She's on the spectrum herself.

My husband was raging about his parents, I told him, did you ever think they did the best they could at the time with the information at hand. Maybe what they did was all they had in them. Just like how (he) can't deal with kid activities for our daughter, maybe a/b/c was it for them.

He finally started to make peace with it, because rage at the past steals from the present. I don't know why your parents are indifferent. Mine told me parents had kids because you were supposed to back then. You got married had sex, there you are. A much different time.

Not saying you don't have a right to be pissed off, but you have to see it in that time frame, not the standard of now.

You might have better luck with a therapist who specializes with ADHD. My husband has issues with executive function, and that occurs with ADHD. His therapist works on that and CBT. My husband ruminates and contrastrophizes any little slight. CBT challenges what was real and what is a distortion. There was some really rotten things that happen, but also there was stuff that no way could have happened how he believes. Him and his therapist worked on that, and his is much happier now.

I know wrote a book. I hope something I wrote might be of use. Hang in there.

What is the goal of therapy for you right now?
I think the best way to get help or help yourself is to figure out what is the most important issue affecting you now and work on that with a therapist.

- Cope with sensory overload better -- if possible, have less pain, disorientation, anxiety, and dizziness over it
- Improve social skills -- get better at making and keeping friends, more effective interactions at work, overcome shyness and feeling like anything I say will come out wrong
- Improve relationship with spouse -- not even sure where to start here--am getting the silent treatment as of this moment. Seems like we keep having the same fights over and over and I'm not even sure what about
- Improve executive function -- be more organized, efficient at work so I'm not having to do overtime to make up for it.

I would pick improve relationship with spouse to work on with therapist.
Improving EF can be done with therapist or on your own by trying various methods to organize yourself.
Sensory overload isn't really for talk therapy, but mostly minimizing the situations, taking a break when it happens, and training yourself not to focus on sensory things that bug you and make it worse.
Social skills can be improved by first working on relationship with spouse.

Spouse issues seem inevitable to never get better--she's always right, doesn't want to do therapy. Sensory issues can't get better because I can't avoid them--spouse is physically disabled so I am the sole source of income, and now I am having to do all the chores and shopping because she refuses to see a doctor. We can't afford a car so I have to go through public transportation, and then she yells at me for not being around.

I am just so f**ing tired of it all, don't think I can deal with much more. Can't see any way out, no way up, and I don't have anything more to give.

Then it was ingnorence in the true sense of the word people did not know. But now it is willfill ingnorence and that is harder to accept. And it is not just the general public but a large percentage of clinicians and a lot of Autism specialists also. People do not seem to be able to grasp that autistics like everybody else learn skills and mature.

Lack if threapy options was mentioned. There seems therapy for every single problem people have with the exception the problems related to Adult Autism.

I will be perfectly honest. Sometimes when I read about someone in their 40's/50's with a spouse, kids, long time career whatever etc, who just suddenly got diagnosed autistic, I find it a bit baffling and I can't help but feel somewhat skeptical sometimes.

Autism is a Spectrum, and some will be less severely affected by it than others.

There are people who might love an autistic person so much that they marry the person, then have kids with that person. The nonautistic (or autistic)partner might be able to adjust to the autistic person's peculiarities.

The vast majority of autistic people are fertile, and are able to have children. Many of them have sexual desires, too--even if some autistic people are asexual.

A prime example of someone with a very severe disability who has women swarming all over him: Stephen Hawking. The man can barely MOVE; yet, he has left one woman to marry another woman.

Additionally, the definition of autism has expanded over the last 20 years. I would be skeptical if people were married, had kids, and were diagnosed under the OLD definition of autism.