Assumptions.

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People assume that, because I'm diagnosed Asperger's and not classic autism, that I'm "mild" and function well.

I came out as "moderate-severe PDD" in various scales (one of them I was severe PDD).

I scream, I bite myself, I punch walls, I attack people and people think it's my mental illnesses that do that. I am NOT currently badly psychotic. I am autistic.

I can't use public transport without a near-meltdown or sometimes even a full-blown screaming fit.

Going out is sensory hell. And people wonder why I stay inmy bedroom for weeks at a time. Socialising is extremely challenging anyway and I like my own company.

My question / point is: how do I get it across to people that this is autism and not me being difficult or ill?

My current mental health team are very understanding but I've had p***heads in the past.

If only this could go away.

I am despondent. None of the meds work. What else can I do??

I'm sorry. One thing that's helped me is to stay away from people who don't even attempt to understand. I have found that people are stubborn and won't change their minds.

It helps me to say "autism". Technically, I say I'm on the autism spectrum. I don't bother classifying high or low unless I feel the person needs to know (like a medical doctor). In some ways, I can be pretty low functioning. I've gotten better, but it's still pretty bad. Other times, I can appear high functioning. The times when I'm higher functioning is usually when I don't have to talk or socialize, lol..

If you really do want to explain this to people, I think using analogies will be good. Or to find a very simple explanation for them so they know why you are doing things like biting and punching. I don't think a lot of people know what stimming is.

Another option is to allow people to see these behaviors and explain you are autistic.

The last option I can tell you about is printing out a very concise page of information and just hand it to whoever is questioning you. This would ideally have information on the definition of autism, a brief section with some myths, and then some facts (including facts about stimming). Try to use very short words and non medical language.

That's very helpful. Thanks.

Most people don't have a clue what sensory issues are or what they are like, or what stimming is all about or how necessary it can be.

Without it being explained to them, they think stims are signs that you are going nuts. They don't understand that stims are a coping mechanism.

They also think meltdowns are just a form of horrible discipline, they don't understand the overloads or frustration you are going through during a meltdown. They just think your an obnoxious, attention seeking, very selfish jerk who has no self control

My problems must be very mild compared to yours but I have sensory overloads, I stim, and I have meltdowns sometimes (though rarely probably quite mild), and the onlooker observations I mentioned are how people react to me even though I don't have the problems as intense as you do.

You are someone else like an understanding friend will have to explain it to them. And you might get tired of having to re-explain it onlookers before or after each new stim/overload/meltdown. I know it can be hard to explain while you're having an overload or meltdown, as it is hard for me to while it is happening to me (depending on how intense the event is)

Having an understanding friend to help explain would probably help. In some of my experiences, people often thought I was B.S.ing when I tried to explain my stims or meltdowns myself. Sadly they sometimes are too afraid of me to even listen. And you probably don't have to mention autism, just that you are very sensitive.

Oh, bleh replied first, and probably gave a better answer.

Thank you both. Very helpful.

Also I sometimes attack myself or attack others seemingly unprovoked and spontaneously, but in fact it's because I get crawling, itching sensations on my skin and I get aggressive or violent because I am upset. How do I explain that? I hit one of the residents here with a shoe because he was talking loudly and he thought I was being weird. I have been known to start kicking or punching myself in public and I get odd looks.

I have these behaviors when I eat gluten, it makes me schizophrenic because of the opioid-effects of the glutomorphine (compound of gluten).

Do you mean at college? Well, I'm thinking the best idea would be (if you frequently see these people) to explain this before hand so they know what to do if this happens.

Did you hit this person because he was provoking you while you were upset? Or trying to "fix' the situation, and it made it worse? If so, I would just yell "I NEED ALONE TIME OR SOMETHING BAD MIGHT HAPPEN". If anyone questions this, you can explain yourself when you are calm. I knew a few people who absolutely needed to be calmed down (by themselves) before they could explain what had upset them. If not, they would just scream.

Do you have an action plan at school? For instance, if you have a meltdown, is there an isolated room you are allowed to enter until you are calm? I had that at a "special" high school I went to. I mean, it WAS for people with emotional problems. However, I would recommend talking to someone that can help people with disabilities in your school.

One last thing: Do you think medication would help with the crawling sensations? I'm not sure if it's sensory or due to anxiety. If, for example, anxiety increases your sensory sensitivities, do you think a fast acting anti-anxiety or sedative would help? I would definitely talk to a doctor about that. I can tell you DON'T wish to hurt people, so it's not like you just go around raging because you feel like it.

Could these crawling and itching sensations be due to clothing or caffeine? It's hard to give you advice on how to cope with that specific problem or explain it. Personally, I also have that crawling sensation. I almost do a double take because there are obviously no insects on me, yet I can feel crawling. It's so weird. With me, heat makes it worse.

I'm hoping you have some sort of routine so you will be able to tell the people you see all of the time this in advance. This would be ideal, because you don't have to worry about explaining this to a stranger. As far as maybe a stranger seeing you stimming, I would try to ignore that. I know it's very uncomfortable, but there probably isn't enough time to explain. The best thing I could think of is to wear an autism ID bracelet and point to it so they can see when you are stimming.

As bad as this sounds, if people start making fun of you, here is something I just thought of: If you are stimming and by strangers, you could simply talk like you are mentally challenged. I KNOW that sounds bad, but it might give them a sign that it could explain what you are doing and they would back off, if that makes sense.

Note: I mean no offense to mentally challenged people. I just feel like that condition is more "known" and people back the "f" off and stop the provoking at times if you mention it. In a world where everyone is educated on everything, we wouldn't really have to worry about explaining ourselves, but we don't live in that world. :/

I have screaming fits and I don't suffer with psychosis, although I think I say weird things that probably makes people think I do (I am just into philosophy and am always pondering things like the true nature of reality and the differences between reality and perception...people often take them to be the same thing, when they are not).

Sorry you are having a hard time of things. I am having a difficult time getting the job center to understand my predicament. I still await to hear about my initial assessment with Aspergers east anglia but they want me to press on with finding work. I said id rather wait until I have seen aspergers east anglia first but they said they take a long time and would rather I pressed on with looking for a job anyway.

I am on ESA, DLA and severe disablement allowance (even if I am in the WRAG group) because (and I quote) "I don't cope with social interactin and change". I was not aware that I was obliged to look for work whilst I still qualified for disability...

I rarely socialise now as when I did try it went horribly wrong and I was finding the experience so upsetting and stressful that I feared giving myself a concussion from head hitting.

I am prone to talking to myself, ranting to myself and on rare occassions even head hitting when I am out if I become too overwhelemed by things (I don't see many employers accepting that one)

Whilst I no longer have fixed routines I do have a usual way of spending my day and a usual order of doing things....working threatens to disrupt that and I don't feel ready.

I had originally enquired about a 2 hour pottery class I wanted to take and enqired for future referrence about finishing my degree and how I would stand on funding if I was considering it full or part time with the local university. They must have assumed I was better and are now trying to rally me into applying for work. I am gutted. I love learning things and as I am horribly depressed over my social ills I wanted to take a course of some kind to cheer myself up. Now I don't have the energy because I am so stressed out I have terrible insomnia again.

The woman from the careers office, who works with the disability job advisor who is trying to rush me back into employment, was patronising and kept going on and on about mental hospitals and talking to me slowly. Excuse me but I have never been in a mental hopsital and there is no need to speak to me like a 5 year old with learning disabilities. I have social difficulties, I am not intellectually challagned. People please stop trying to treat me like I am. It's offensive and upsetting and I do not want to ever see those people ever again. I refuse (refuse) to interact with them if they can't talk to me like a grown adult.

I desperately need a support worker to represent me...why won't they let me speak with and let me have my initial assessment with Aspergers east anglia before proceeding?

I have no referrences as I have not worked in years. I tried to tell the careers lady this and she just replied with "think, there must be someone". Um what part of I have not worked in years and I have no friends, family or partner etc due to severe social difficulties could she not understand?

Despite my academic ability, whilst I have been able to finish college courses I have never been able to hold a job for more than 6 months due to my social difficulties etc. I generally tend to have a meltdown in the middle of work and walk out or report in sick never to return again. The last time I broke down in the middle of the damned shop and had to obtain a sick note from my drs. I lasted 2 months.

The problems that cause this have not even been fully assessed yet alone anything else so are still a major problem for me. If i got a job, i won't be able to hold it.

The result? I just had my first head hitting session in 2 months. I had kept my stress levels low to avoid it, now they are through the roof again and my mood is crashing.

Even tho you live in a different country I feel your pain. Having similar issues trying to obtain disability after my last job went south. At the SS office they keep pushing and pushing me to try to find employment. Like I could give a reference from my last job where I found out I was fired after having read the paper prior to work that day. It had an ad in it for my job and nothing had been said prior to that at work! I went in and waited till lunch (I have no idea how I contained myself) and when talking to the owner about a project I simply asked "Is that ad in the paper my job?". He wouldn't even look at me and then quietly said yes it is. I asked him when the hell he was going to break it to me and he said wasn't to be in the paper till tomorrow and they had plans barring me from entering work that day.

I think they are given goals to get as many as possible off of assistance or to deny them no matter what. As in my case they know I have no income or money and I have to pray a lawyer will take it pro-Bono or whatever it is called. I need more medical care, medicines, specialists but all are unobtainable if you don't have the insurance or money.

Due to all this the insomnia, stress, resulting depression are taking their toll. Only thing that keeps me hanging on is caring for my 86 yr old mother who has CHF. If not for her I fear I wouldn't be reading nor responding to your post. It is the ONLY thing keeping me somewhat together. How long I can last like this is the question.

With no friends or family to help makes it worse. Aside from my Mum, I have no one else and half the time her lights are on but nobody's home kinda thing. At least I can vent some here and I think it has helped. Hope it helps you as well. You aren't going thru this garbage alone. Too bad society just ignores us and wants us to go away. I fear it will not change any time soon unless someone finds a way to make money helping us.

I've never formally worked, been on benefits since I was 19. They tried to force me to work and when I got the letter I had a severe violent meltdown and ended up in A&E. My occupational therapist wrote a very stern letter to them explaining how my autism is not mild and how inappropriate they were being. I appealed my income support and now I'm in the Support Group (not the Work Related Activity Group). The benefits people forced me to go to a GROUP session at the job centre and I had a screaming fit there. Thankfully my support worker was with me and managed to de-escalate the situation.

I have some voluntary work coming up soon but it's supported.

Yeah, a lot of people assume Asperger's is high functioning, and don't realize how severe it can be.

By definition, AS has no language delay, so the person will probably talk OK. But in every other skill area, there can be a big range.

Finding Ben by Barbara LaSalle describes a pretty severely-affected AS guy. At 18 months, he could speak in sentences, but he couldn't walk unaided. He was noticeably delayed in self-care and toileting skills. In adulthood, he was unable to live independently and kept going back and forth between various residential placements (most of which mishandled him and made his problems worse). He was finally diagnosed as AS and NVLD in adulthood, and while he had a gifted verbal IQ, his nonverbal IQ was in the MR range.

Have you talked to a doctor about that?

Also, are you taking any stimulant medications? Those sensations can be a symptom of a stimulant overdose. Even if you're on a typical dosage, you might be more sensitive to the medication and need the dosage lowered or removed.

can parents give the MH team developmental history? that woud help with getting understood.
all those challenging behaviors will be easily recognisable by parents as having always been there,the mental health side;such as anxiety is what makes behavior go up/down.


aspies/HFAs cannot be 'low functioning' by criteria, low functioning autism is when someone has autism with intelectual disability,our ID has a significant effect on how our autism presents.
however the severity of symptoms can clash with a persons environment,life etc;aspies whose HFA is more severe have some complex needs and more issues with navigating a difficult world as opposed to being low functioning.

Could you maybe write something that explains it or print out something that you can hand to people if you are getting close to a meltdown?

People get distracted when they see someone doing the things you described, so even if you can explain clearly they are looking more at what you are doing physically than they are listening to your words. But if you have written something out beforehand it shows you are not having a psychotic breakdown, because it shows that you understand what is triggering you and how it affects you and what you might end up doing in that situation.

Sometimes analogies help. I was explaining to a friend today why I got so upset when we were camping last year and our friends moved my table without asking me first. He could not understand why that change would bother me so much. It was just a tiny table but I had set up the camp site and I could not negotiate sudden changes that I was not prepared for. So I told my friend, imagine what it would be like if you had guests over at your house and they just started rearranging all your furniture without your foreknowledge or permission and did not care how you felt about it because it's how they wanted it to suit them and then they got upset at you for having a problem with it. He said he would be freaking out by that. Then he understood how I felt it.

When people ask me about sensory issues I tell them, imagine how you would feel if you had to endure hours of screeching on a chalkboard or an equivalent sound that you could absolutely not tolerate or if someone were to be bashing you in the skull or stomach with a sledgehammer, which is how I feel sometimes from certain noises and then they had a problem with you wanting it to stop or wanting to leave the room. Once I tell them something like that they tend to see me a little differently.

But I tell people I have Asperger's and I can't be around them all the time. And I give them another analogy. Imagine someone dunking your head underwater like they do in mafia movies when they try to get you to tell them something and they only let you come up for a quick gasp of air when you are literally about to drown. When I get really overwhelmed socially it feels like I am drowning almost. And I worked in aquatics for many years and I have almost drowned three times so I know what it feels like. But if you can tell people that you are on the Spectrum and give them analogies to things that they can relate to that usually helps.

I know it is wrong, but I play to their assumptions and misinterpretations....right from the word 'go'.

One good thing is just to keep on saying; 'please explain yourself because I fail to understand you' over...and over...and over (ad nauseum)....but then again, I AM 'difficult' when my own needs are not being met and I have learned this technique.

You may/not understand them, but that is not the point here....the point of the exercise is to get them to throw up their hands in total exasperation and go; 'my god, you really are fricken insane and need help' to which, I usually say; 'told ya so'.

The other alternative (one I am discovering) is just to become selectively mute and you can leave them guessing as to whether you are doing it 'on purpose' or it's some kind of reaction to hysterical trauma or something...

Assumptions are generally made because human beings always must, have and need to be 'right' about everything, even if they know absolutely nothing.

So, not saying anything and 'keeping them guessing' is a good game to play.