"Real autistics" versus Aspies and HFA

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What do you make of parents of severe classic autistics who insist that only severely withdrawn and totally disabled autistics are have "real" autism"? What do you make of this attitude?

I came across this today this recent article written by John Elder Robison entitled; "Fixing Autism Research."

http://www.technologyreview.com/view/533366/fixing-autism-research/

Mr. Robison made the point:

We can make life better for the autistic people who have major cognitive and functional challenges that today’s science can’t fix. We have a duty to make their lives better through applied technology. We owe it to our most disabled brothers and sisters to do all we can to ensure their security, safety, and comfort.

So how might this change in research direction come about? For one thing, we can put autistic people in charge. The fact is, researchers have treated autism as a childhood disability, when in fact it’s a lifelong difference. If childhood is a quarter of the life span, then three-quarters of the autistic population are adults. Doesn’t it make sense that some of us would want to take a role in shaping the course of research that affects us?

If you’re a researcher with an interest in autism—and you want to really make a difference—open a dialogue with autistic people. Ask what they want and need, and listen.

This is the response he got form the father of a severely withdrawn and disabled 19-year-old son.

"Ask what they want and need, and listen" WHAT? Hey professor you have to resign. Our autistic population, the ones with severe regression , no language , unable to toilet themselves, bite people without remorse, bang heads, need severe sensory input, develop seizure disorders, gastric distress etc etc. ARE SICK!

How dare you give credence to the rest of these frauds who claim they have the same disability as the kids who wonder into a river or need to be in prisoned because the state have eliminated options for families under attack. Those kids who fear no car driving down the road and will never have a way to tell a true friend how they feel.

@geoff.dubrowsky You obviously don't know who John Elder Robison is. The man, himself, is Autistic. You are just describing those who are more severe.

geoff.dubrowsky
geoff.dubrowsky
10 hours ago
@PCFree50 @geoff.dubrowsky No he is not autistic If he can write, read, and be articulate enough to become a professor! At best he may have psychiatric issues but he does not suffer with the sickness that affects true autism cases. We need to stop watering down the diagnosis even if the number becomes less dramatic.

What do you make of this attitude? I am well aware that there many autistic people far more disabled than some of us who are able to live relatively normal lives - but I still feel that there is some commonality of experience - but it is a matter of degrees.

I responded to these comments with this statement:

According to the American Psychiatric Association DSM-V guidelines Autism is a spectrum ranging between level 0 and level 3. Level 0 being non-impaired. Level 1 being mildly impaired and in need of some support. Level 2 being moderately impaired and in need of substantial support. Level 3 being severely impaired and in need of very substantial support.

Almost all medical or psychiatric conditions have a range between their most mild and most severe forms. It happens that sometimes the mild becomes more severe or the severe becomes more mild.

One of the most famous autistics and writers on Autism today is Dr. Temple Grandin. As a small child Dr. Grandin was a non-verbal and non-communicative profound autistic. She now speaks all over the world and has offered several books. Is she still autistic? Dr. Grandin would certainly say so albeit a lot less symptomatic.

It is nothing unique to Autism to have a wide range in severity.

Their attitudes are visceral and seem to spawn from perceived sacrifice - that is, they have had to give-up their lives to care for their child. It's a very sensitive topic and I don't really know how to discuss it without offending somebody, so I stay away from it.

That's the only brand of autism he's been exposed to his entire life, and he's had to deal with it indirectly every day of his life for 19 years. I'm not going to invalidate his points, though, he is absolutely right. His son fears no car going down the road and he can just get up and wander off into the woods with no concern or care at all. That is something I will never experience, despite being labeled autism. It is a spectrum disorder, though. Like mentioned, some will require much greater support than others. I don't think it is necessary for him to call us out, because I don't feel we're trying to trivialize his suffering as a caregiver. I feel for him, I understand how difficult it is. The experiences I have as being diagnosed with asperger's syndrome are very similar to autism on a mild scale. It has greatly impacted my life and my parent's life. The majority of people with asperger's will require life long support as well.

I personally feel it is a waste of time for someone with asperger's to look at low functioning diagnosed folk as inferior just as much as it is for him as a guardian of a low functioning autistic to trivialize our experiences. I know our experiences are different, but we all have the same symptoms and all desire the same level of understanding from the public, and fighting among each other is a horrible way to gain that understanding.

I think it's self-evident that the needs of autistic children with severe dysfunction (and their parents) are completely different to those on the old Asperger end of the spectrum. In real world terms they may as well be two completely different diagnoses in terms of their impact and in outcomes.

I completely understand why many on WP prefer to focus on (and socialise) with Aspie people like themselves, it's only human nature. I also understand that parents of Aspie children are not interested in the plight of children perceived to be low functioning (it's not their problem, after all, they have enough on their plate with their own children's issues). The irony is the attitudes mirror the same disconnect that many Aspies experience with NTs. All you have to do is swap "Aspie" with NT and swap "low functioning" with "Aspie" in the previous sentence.

Not everyone on this forum wants to change the world. Most of you here just want to be "normal"
people and survive, function and succeed in mainstream NT society. Those of you who claim you don't are lying to yourselves (sorry it had to be said). I get it, in order to be normal you want to distance yourself from what makes you insecure about yourself in terms of socialising with NTs. For many (perhaps not all) being associated with low functioning autism is therefore not desirable.

Some of you wish NTs would walk a mile in your shoes. If you are interested in autism advocacy then try walking a mile in a "real autistic's" shoes. Try and socialise and spend time with people who are low functioning. As Norny mentioned most parents of low functioning kids sacrifice their jobs and friendships and (often) their own relationships bringing up a child/ren with classical autism. It's like living in the twilight zone.

It's easy to pigeon hole people with labels. It's human nature. If you don't like NTs labelling you as disabled, then please offer the same courtesy for those the OP referred to as "real autistics". The whole high functioning, low functioning labels suck! it's like applying the same discrimination NTs apply to your fellow autistics.

Anyway this is more of a comment than a question. But please be respectful to all autistic people and don't apply labels in order to make a distinction between "us and them". Now please feel free to carry on.

It's not so much a waste of time. It's just transferring the same type of prejudice from NTs onto a group of people who are even more socially vulnerable than yourself. Personally I call that bigotry.

I think that you have reason. I will not offend anybody too.

Thank you Norny!

It must be very frustrating for parents of kids who are profoundly autistic and have no way of communicating and caring for themselves and then they see all this autism awareness crap and how it's a gift and how it's a difference and how there shouldn't be a cure and they need acceptance, it's as if the severe ones like the father's son get swept under the rug and forgotten about and that his issue is being trivialized. I have noticed parents of severely autistic kids vs the higher functioning people on the spectrum and ones who can communicate (using a computer or some kind of communication device like Carly was doing) and express themselves well in writing and bam they are like normal people all of a sudden and not so intellectually impaired as everyone thought they were.


Do I think people with severe autism should be ignored? No. I think their experience is valid too and their families who are afflicted with it. I think it's very easy for them to trivialize ours because of what we can do their kids can't do so they express their frustrations because of all this autism awareness they see about how it should be accepted, not be cured or fixed. It's like we are forgetting about these people because we are so focused on higher functioning cases these days. It's like autism no longer means locked in their own world and no language and rocking all hours of the day and screaming or head hitting. When people hear of autism today, what do they picture now? Twenty years ago they would have pictured what I just described.

I think it's bigotry that virtually all HFA & Asperger's people have to fight for help because all the help is focused on LFA people. LFA people who can be unpredictable, possibly violent. I should be able to get support without fear of being hit by someone else with Autism. Without parents thinking because I'm female and on the spectrum I must give their low functioning Autistic son a chance, despite him not understanding what no means, or behaving in a way that makes me feel unsafe.

People with HFA and Asperger's through no fault of their own are now called supremacists and elitist for wanting to be around people like themselves. As it is now it's nearly impossible to have a Asperger's support group without parents of LFA children lying that their child is high functioning or has Asperger's to get them in, or manipulating others with their sad tales like how their child has to be in the group. If you say no they'll march around the neighborhood with their child gathering pity to get others to bully you into accepting their child. They cannot take no for an answer.

As it is these LFA parents have attempted to silence those on the higher end of the spectrum by getting Asperger's moved into Autism, because it was unfair to them and their children that it wasn't all about them. Now people who are HFA and Asperger's are bigots for wanting help? For wanting more out of life than babysitting those with LFA? All I've seen from the LFA group is abusive behavior. Towards those on the higher end of the spectrum, society in general. You don't gain acceptance through bullying and manipulation.

As things stand now people on the higher end of the spectrum have to fight to get help. They are told because they don't fit the stereotype of Autism, that they look normal, they don't need help. It seems all efforts have been focused on pushing HFA and Asperger's people out of recognition so LFA people get all the help. We can't complain because they're more socially vulnerable? I wonder sometimes why HFA and Asperger's people are considered Autistic. It doesn't help us, it makes us vulnerable to viscerally emotional parents of LFA people who have no issues with using us? Maybe there should be a diagnostic division between HFA Asperger's & LFAs. Then everyone would get the support they need, instead of being guilt tripped by parents of LFA kids, and bullied into watching over their children whether they like it or not.

I'm a real autistic and meet all the diagnostic criteria. If others don't agree with this then I must not be autistic. At this point in my life I really don't care anymore. I dislike conflict.

That guy obviously knows nothing of JE Robison's work. He advocates for services and treatments across the whole spectrum and never minimizes the profound end.

I don't see how denying the existence of mild or "high functioning" autism helps his son.

I passionately support more services across the spectrum. That includes decent residential services more people on the profound end so parents of severe autistic people don't have to worry about what happens to their kids when they die.

Everyone should be able to get the help he or she needs regardless of severity. And we should be supporting each other all throughout the Spectrum rather than bickering over who is more or less than. That is just wrong and it's pathetic.

What's pathetic is I was pushed towards suicidality by parents of LFA people, and I'm supposed to just go to support groups and hope I won't be abused again.

That is really scary. I hope you are okay from that now.

Some parents of LFA children are like this, some parents of LFA children are not.
I probably can't make further comments without offending others either, so I will stop here too.

He's entitled to his opinion; it doesn't offend me.

That said, practically every disease or disorder under the sun is on a continuum of severity, ranging from mild to severe. I can well understand being bitter and distraught if you're dealing with a case on the severe end of the spectrum, but that doesn't mean milder cases are made-up.

I don't like the way some higher-functioning folks presume to speak for the entire autistic community though (particularly if they don't even have an official diagnosis).

At this point it seems higher functioning people's input is barely welcome anymore. When they made Asperger's a part of Autism it was clear, our insights were unwanted. Symbolically they made us just go away.