"Real autistics" versus Aspies and HFA

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I am not sure if I have a right to an opinion here. I am not diagnosed in any way and quite honestly I wish there was something other than the label of autism that I could refer myself and other people to. To me it seems entirely unhelpful to have the spectrum , but diagnosticians are referring to the biology of the disorder, while everyone else is thinking about the symptoms and whatever can be done about them. It seems ridiculous to me to think that I have the same neural problem as someone LFA, and there is nothing else comparable to make it easier. It's not like Alzheimers where someone with first symptoms will be totally different to someone in later stages who is completely unable to function, because Alzheimer is a progressive disease, whereas autism is a difference in neurology. But how can my neurology be the same as someone who doesn't function alone at all? So, perhaps I am on some different spectrum which just happens to have similar symptoms. Either way, it helps me enormously to be able to come here where I can relate to others in a way I cannot relate to anyone else and to learn about various coping strategies. But I am not entitled to special help and that sucks because I definitely have a need for help with my particular way of being which has proved resistant to all attempts to change it and because with age I am starting to lack the requisite energy to keep up the pretense of not being the way I am.

So to me it seems that the medics needy to go back to the rethinking the spectrum, the labels and the help offered and available.

Hi Plum, I had not seen you post before so first I just want to say Welcome.
And even without a diagnosis your opinion is valued and just as important as anyone else's.

There are, however, core symptoms and traits that are common to all people on the Spectrum whether LFA or HFA. These are the symptoms that are used to define Autism and that are looked at to diagnose it. The clinical difference between an LFA and an HFA is IQ level. An LFA is defined clinically as having an IQ less than 70.

Even though by sight severe LFA's may not seem to have anything in common with HFA's in reality they have very much in common. One of the biggest defining factors in determining Autism is the differential between the ability of the brain to receive stimuli and to process that information which it receives. Every Autistic person whether HFA or LFA all across the Spectrum has a major differential with this. It is one of the core diagnostic must haves. It is the cause of a lot of the symptoms that we struggle with. To give you an example, I can receive information and stimuli in the 87th percentile. But my brain can only process it at a speed and efficiency in the 30th percentile. This means that information and sensory input is entering my brain way faster than my brain can make sense of it. This is the root cause for most of my Autistic traits and symptoms including meltdowns and lack of social reciprocity and sensory overload. Also, when people are born Autistic, some people have Autistic symptoms because of environmental factors or microbial intestinal factors that attack the brain, the Autistic brain has been found to be physically different than the NT brain and that is the reason for some of the things Autistic people struggle with as well.

The difference between severely affected Autistic people and not as severely affected Autistic people is the severity of these symptoms. But every Autistic person has to have certain core symptoms to be diagnosed Autistic. So in reality, we are completely connected across the Spectrum and we all have these core symptoms in common. It's just that some are more severely affected by them than others. But we all have them and to be diagnosed Autistic one of the determining factors is that they have to affect our lives in a way which impairs our lives. Because NT's have these traits too but in miniscule amounts compared to Autistics so their lives are not impaired by them. So what makes us Autistic is that these symptoms have to be present in a life impairing way and that they had to have been there since childhood. But the core issues are exactly the same for an LFA as for and HFA, just in greater or lesser severity but both the HFA and the LFA have them enough to impair their lives on a daily basis.

You highlight reasons why I think the autistic spectrum should be represented by scores of specific traits, rather than the sum of traits. That way support and treatment can be focused on what the individual needs help with most. The spectrum would still exist, but that makes sense as the varying degree to which your neurology differs significantly from the norm is almost certainly less than that of a person with LFA. I suppose you would say that they are indeed 'more autistic' than you are (with no positive or negative implied).

That could all be a bunch of crap though, as it could be later discovered that HFA is something completely different to LFA. There's too much unknown to make any solid statements/suggestions.

Skibum also hits the nail on the head. LFA and HFA may have a ton in common. Btbnnyr has reinforced that (indirectly) by claiming that research has shown 'bloomers' to be distinguishable by their lacking of intellectual disability. The brain is plastic and it would be expected that it becomes 'less autistic' in the transition from LFA to HFA and beyond, at least from my point of view, which of course excludes the idea of masking.

Hi skibum and thank you for the welcome and for the explanation. From what you describe, the biggest problem LFA have is the low IQ rather than autism and it is not obvious to me if one is caused by the other. I don't think that my IQ is in any way related to my symptoms but it did seem to me that autistic people with savant abilities are portrayed as if their IQ and autism are connected.
I have had severe meltdowns caused by sensory overload just as someone might who has IQ of 70. But I don't know if their meltdown might be much worse because the don't know what is happening or why or if mine is worse because I know why but also that I am behaving in socially unacceptable way and that nobody would have sympathy for me because they think I am having a tantrum I should snap out of.

Either way, I don't think we are having the same experience regardless if the same type of neuronal configuration caused the overload.

Edit: Re Norny. Yes, that makes sense to me.

I also know of a couple whom I saw on Oprah once who are both completely blind. In fact, the wife had her face shot off when she was 16 and has no face at all. She recovered and has a prosthetic mask face that she puts on every day. She eventually married and her husband is also totally blind. I think he was blind since birth. They have a beautiful apartment and have at least one child, they may have more by now. But their son is sighted and healthy and happy like any normal little boy. These people live very well and do not require hands on help to live their lives. Should my legally blind relative who requires hands on help and my family be angry at them because they are functioning at the level at which they are functioning? Should we say that they are not allowed to claim blindness because they can do what they do without help? I think not.

Plum,
Please forgive me because I am a bit confused by your last post. I just need to reread it a few times and ask you some questions because I don't understand everything you are saying. But I will do my best because I want to understand you. I just want to ask one thing now but then I have to go to bed.

You say severe meltdowns from sensory overload like someone with an IQ of less than 70. I don't know what you mean about that and I am curious and wondering if you can explain it more. The reason I ask is that I have sensory overload meltdowns a lot and some are quite severe but my IQ is much higher than 70. So I am confused as to whether you are saying that there are meltdowns that are different if your IQ is lower. Please help me so that I can understand what you mean. I have to sleep now though so I will check here again in the morning. Thanks.

I'll agree with that and so would my parents. The thing with me is that since I've been in school for kids with different degrees of autism, both me and them have seen all the different shades of it.

Now I will admit sometimes I feel like I'm more genuinely autistic compared to those that live more ordinary lives and don't have the level of impairments I do. But, I feel like they can relate to me and I can relate to them, and I do know they have challenges and difficulties from their autism.

I sometimes wonder if the anger that is the topic here, from those parents, is a way of them expressing the suppressed anger of not having the "normal" child they planned. They have to bottle up their unresolved feelings about this, possibly the anger is a way to express a feeling of being deprived of the parenting experience most parents have - and the targets are other ASD people, because they are the low hanging fruit.
Could be completely wrong about that, though it is one of my thoughts about this topic..

But then I had a completely different idea. In the 1960s, the tragedy of the thalidomide affected children, who were born without any limbs. Of course the parents were completely in shock (no scans then) and devastated, then betrayed to learn that it could have been avoided, but wasn't. The mothers had been given the "new wonder cure" for morning sickness..... They parented the children with little notice, help, nor complaint. They got on with it, they fought for their children to be educated, accorded dignity and respect. Not once can I think of an instance of any of those parents expressing resentment toward the medium or marginally disabled. They fought for decades for compensation - not so much for themselves but for their adult limbless children - and the way that legal barriers were erected was shocking. Thinking of them reduces my sympathy for the parents of more dependent/disabled autist offspring, who often do have an aura of entitlement that would exclude everyone else...

I think they are expressing a struggle with or opinion on a perfectly legitimate issue: whether or not it is appropriate to categorize Kanner's autism and Asperger's disorder as different manifestations of the same condition. Perhaps they are not so eloquent and a bit more emotional than others would like, but I think that what they are alluding to is an important thing to for some people to discuss.

On the other hand, I've wondered if some of these parents are making classic autism out to be worse than it is by confusing it with the common co-morbid of cognitive disability, seeing the two as a single condition. They may be looking at AS/HFA and thinking, "this is not autism" without understanding that what they are perceiving IS consistent with autistic traits, just without the cognitive disability.

If I understand correctly, JER simply wants to redirect the money away from things like genetic research (which will take many years to achieve results) and towards things that help autistic children today (such as therapies, tools, treatments and services).

I was wondering the same, as in fact their children are having two (or more) inherent disabilities.
The way the father describes his son he seems to have severe or profound mental disability.
The term low functioning autism is kind of misleading as it suggests that it is entirely the severity of autistic symptoms which makes a person "low functioning".
Then people start comparing autistic persons along the spectrum deciding a "high functioning" person cannot be autistic, but what makes the person "high functioning" is the absence of a second inherent disability.
I am wondering: what is the prevalence of intellectual disability in the whole autistic spectrum compared to non-autistic persons?
It's clear that many years ago when the prevalence of autism was 1:10000 the term autism actually described the concurrence of two disabilities.

Wow, this is a really great insight. I think you are spot on about this.

Reminds me a bit of a thread i had earlier http://wrongplanet.net/forums/viewtopic.php?t=246688

My iq is 85 or 87 I must check.

I believe that the low functioning label being based on iq is bull crap it should be based on how a person is able to function by them selves, with a caregiver and in society/ social situations how they are able to take care of themselves how they are able to work and communicate with parents family's friends and society.

On a though personal individual level and specific symptoms a person might have.

As well as their diagnostic level. For example mines 2

(Although I sometimes wish the scale was out of 5 not out of 3)

Not based on a number from a silly test

To his tirade:

1) I do have seizures, fortunately only at night.

2) Spending much of my childhood not being able to manage any form of speech that didn't just sound like words read off of a page was not exactly a picnic.

3) The fact that I was physically restrained in a "therapeutic hold" for a half-hour, when I was 11 years old, because of a teacher who didn't understand that I was not going to start trying to stab people just because I had had a meltdown--and the fact that this kind of reaction by a teacher can make a meltdown worse and cause irreversible trauma for the child--demonstrates that teachers need better training on dealing with "high-functioning" forms of autism, not just ones with profound autism.

4) Your kid doesn't have speech? I'm sorry. When I was 11 years old, I didn't understand the finer points of spoken language. When my mom told me "sarcastically" to do something, I didn't know better than to either go ahead and do so or protest against it, and I was punished for this. There were many other communication failures, so just because I might have a "hyperlexic" vocabulary doesn't mean that the world is an open book for me. In spite of a stunning memory, there were parts of human speech that, when I was younger, I could no more understand than I could flap my wings and fly to the moon.

5) It's actually a pretty lonely existence to have nobody in the world who wants to hear what you have to say. If you have narrowly focused fixations like a person with higher-functioning forms of autism, you spend your life surrounded by people who sigh, roll their eyes, and tap their feet impatiently when you try to relate to them. They really don't realize how rude they are being. Unfortunately, we can't just train everyone in the world to learn how to get along with those of us with "spectrum" disorders, but we can provide people with spectrum disorders with programs like TEACCH, which helps train us to get along with regular people, among other things that are missing from our lives.

6) Maybe, if you learned how to communicate with people who have Aspergers, you just might learn a better understanding for your son and what goes on in his mind. It might help you to be able to take a close look at him, one day, and find someone in there who is truly worth knowing.

7) Because, like your son, we are cut off from the rest of the human race. We don't understand them. To us, they are hostile, dangerous, unpredictable animals, some of which randomly become violent just when you thought you were starting to understand them.

8) There are other people with Aspergers who have had an easier time than I did. Should I resent them just because they haven't suffered as much as I have? I don't resent that. It makes me want to get up and dance. I'm cheering those people on. I hope that, someday, everyone with a spectrum disorder can learn more adaptive ways of living with their disorder early on, so they don't have to go through some of the loneliness and pain that I once did. I would be a savage and a philistine to resent someone just for being better off than myself.

Excellent point. I have a friend who has an LFA granddaughter and he loves talking to me because as he gets to know me and what I go through he learns so much about her. He even asked me to copy a paragraph from my Dx because it explained something that I do which is 100% what she does. She just can't articulate to others what she is going through at all so he wants to give that to her teachers. But when I tell him about a lot of stuff that I go through he says, "Wow, that is exactly what happens with "granddaughter" and he is able to understand and help her better.

Amen to that! I agree 100%.

I agree that the definitions of LFA/HFA should be redefined since IQ can be so misrepresentative of someone's capabilities.