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Autism, Asperger's: Who is Truly Disabled?

Peckikng order By Jake Crosby

 “A "Refrigerator Mother" Adult with Autism Speaks Out,” read the title of one post from an autistic perspective, which was actually “more of a cry for help than anything else,” according to the post itself. To anyone reading the post, however, it is clear that “a cry for help” is by no means an understatement. The post, written as a letter, is filled with horrendous health problems few can fathom. Perhaps what stood out most to me was “nearly dying of acute heart failure in my 20s.” 
 
There is no doubt much anger in what is written - at the doctors who were no help, at the psychologists who would blame the parents, and more recently at the Neurodiversity proponents who are using their ASD diagnoses to attempt to speak for everyone with an ASD diagnosis. Most of the NDs just have Asperger Syndrome, which would seem comparably trivial to others who either have or are parents of those with more severe ASD-related problems

The NDs advocate against a cure, only see society’s reaction to autism as a problem and not the condition itself, and often try to prevent people on the spectrum from getting help. Deborah Delp, a mother of a child with autism and the very first person to comment on my first article put it this way “As a parent of a non-verbal 11 year old son (yesterday was his birthday), I have wondered if he is happy and whether or not he wants us to heal him…And still I wonder if he would prefer something other than what has been provided for him. After reading your piece, I will wonder a little less.” Ms. Delp is one of many parents just trying to do what they see is right for their autistic children, but is under constant pressure from NDs not to. This has prompted many to lash out at them.

Unfortunately, some of the backlash against the NDs has not just been directed at those who deserve it. People with Asperger Syndrome are now getting their disabilities trivialized from both the NDs and some of their opponents. Reading this post saying we are not “truly disabled” is not the first time I’ve heard such sentiment expressed. Still, not all of us subscribe to Neurodiversity.

One can also learn from the internet that people with Asperger Syndrome not only suffer from the standard symptoms which are disabling enough, but also from life-threatening conditions, which are often written off as co-morbid and having nothing to do with autism.
Michael Thomas, a teenager with Asperger Syndrome and Bowel Disease, is one such example. He was one of the 12 subjects in Andrew Wakefield’s case study published in The Lancet in 1998. His physical problems are horrendous; he described himself as being in “constant pain.” His mother’s story in “Selective Hearing: Brian Deer and The GMC” went into further detail about her son’s nightmare. He suffered “attacks,” during which he tested positive for Measles “in high levels.” At one point she spoke of having to rush him to the emergency room, where doctors and nurses “literally” had to save his life. The doctor turned to her and said, “Mrs. Thomas, we are treating the emergency only.”

Michael suffers from life-threatening physical problems, he has been denied help from doctors and often has to deal with his autism-related physical conditions being ignored. Unfortunately, NDs are more likely to be associated with Asperger Syndrome than people like Michael are. This is probably due to Neurodiversity’s activity on the blogosphere and the disproportionate coverage it gets from mainstream media over other autistic people.

Perhaps that is the reason for one particular comment I read, saying, “It is usually only those with Asperger's who are higher functioning, who are cold and unaffectionate. The more disabled you are, the further away from this you get.”

Statements such as these, although hurtful, were undoubtedly influenced by the un-relenting nastiness of Neurodiversity supporters. While words like “cold and unaffectionate” may apply to some NDs, as I have been on the receiving end of some of their meanness, such words do not apply to people with Asperger Syndrome. The wrongdoings of a few within this group do not implicate the group itself. The fact that NDs include a lot of people with Asperger Syndrome does not mean everyone with Asperger Syndrome is an ND, and does not mean that everyone with Aspergers should have to pay for what a few claiming to speak for them are doing.

Jonathan Mitchell, autistic adult from California and author of a blog I frequently read agreed with me, saying, “I agree that Asperger's and very mild ASD's can often be disabilities and should never be trivialized.” Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

Jake Crosby is a history student with Asperger Syndrome at Brandeis University, and a Contributing Editor to Age of Autism.

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This is tough territory. Part of this reason it's tough is the bizarre form of identity politics being played out in the ND movement. It's very damaging. That's Jake's core message and it takes a lot of strength to speak out about it. In that regard, I think Jake is actually speaking out for people like Roger. (FWIW, Jake, I think the comment in Roger's earlier post was more of an aside than a challenge to your argument. I think he feels like he's dealing with medical problems just the way you have).

As for how we define "disability", although I suspect that Lenny is in some sense technically correct, I also agree with Jake that in the everyday usage of the word disability, we do those affected with Asperger's a disservice by not acknowledging their struggle.

And if Jake prefers to call it a "disability", my view is that he has more insight than me, so I'll pay more attention to his definition than any official one. Michaela doesn't have an Asperger's diagnosis, but her symptoms are closer to that profile than they used to be; and she certainly is disabled.

I'm a contributing editor to this site, but played no role in Lenny Schafer winning the "comment of the week." His comment isn't just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

Lenny - your comment is grossly offensive to those of us with kids on the 'higher end of the spectrum'. Aspergers, ppd-nos, etc are NOT personality disorders. What my son, and others like him really has is vaccine-induced neurological and immune system damage. It is NOT a personality disorder when you have a child whose brain cannot function normally and cannot process input or output correctly, and whose immune system will not function correctly. I agree the labeling of the autism spectrum is subjective and ridiculous but I'm disgusted by the growing group of people who are trivializing the serious daily struggles our 'high-functioning' children have. I am outraged that the editors of AOA would chose this horrible and dividing comment as 'commenter of the week'. You owe us an apology.

Jake, what a wonderful piece.

I have relatives with Aspergers - a 27 year old who had no extra help who is unemployed and has very few friends. I worry about him. I also have a 4 year old nephew diagnosed at age 2, who is getting lots of help and thriving. It breaks my heart to look at the difference. I'm so grateful my nephew gets the help he needs - but I'm also aware that it's kids like him that feed the idea that there's no increase in the number of kids with autism, it's just increased diagnosis. Which makes me crazy.

A few, self opinionated, people with Asperger Syndrome who have access to the web and / or support groups try to 'split' themselves away from autism.

In my limited experience with these few people they tend to distrust parents of children with autism and have one very large 'chip' on their shoulder.

I am sure they DON'T represent the majority of people with autism.

Our son had to enter hospital a couple of years back with an ear infection, he had bleeding from one ear ! The hospital staff had little regard for his autistic 'requirements' and words had to be said.

I suspect some may say that those with Asperger Syndrome have the 'disability' of not realising others on the spectrum do not agree with their own thoughts, however valid they feel they may be. All of us have had that 'disability' at least once in our life !

The 'cure' for autism is a better understanding by the general public, medical staff, politicians and for there to be 'one voice'.

Chris

I enjoy my autistic brain and its gifts but my gut is on fire! I knew shots were permanentlyh harming me as a toddler. But who listens to a Kid trying to avoid needles? But I remember how they made me feel and they feeling didn't go away. I stayed not quite right. I no longer could be happy. I remember arching my back and screaming for hours after one shot. My parents thought it meant I was a fighter. I've had to be! Because that shot DID something to me!

We were meant to be, but we werent meant to be sick.

Measles, gluten, MSG heavy metals, and the stressful modern life style are too much for us.

Google Autism and the Neanderthal theory. We've been around for a very long time and we've contributed greatly to society. I suspect measles is what did in the Neanderthals.


We are very creative people. I belong to an autistic support and celebration group and boy do we have fun! But, many of us are very sick and we want help for that.

There is no evidence Einstein and Tesla and Oppeinheimer and others were as sick as modern autists are but they definitely show signs of being one of us. So too Bill Gates. His gut isn't on fire that I know of. So too Billy Murray. Stephen Speilberg, etc.

Ms. Delp
Thank you for sharing how you deal with your struggles. Your support is a reassuring reminder that what I am writing is actually having a positive effect on individual people's lives. I wish the best for you and your son.

Jake,
Another great article as usual. After reading your first piece here I stopped paying any attention to the ND community.

JR the son referenced in my quote that you used in this article is a very happy child. He's very healthy and he loves school. He is showing more awareness of others and is beginning to interact with his peers more. I am positive that part of this is actually the aging process. I am equally convinced that the supplements and the educational placement has more to do with this improvement.

I want to thank you Jake for your perspective on the ND vs healing wars among the autism community. You have given a mom who always wondered if she was doing the right thing a little more peace of mind.

I know now I am doing the right thing for my son. Thanks Jake, because of you I don't lose anymore sleep over this issue and I don't care what the ND's think. Never really did actually.

Roger Your blogs has meant a lot to me, and been very informative. I thank you from the bottom of my heart for them.

I believe you, when you say that an infection caused you further problems. From what my mother-in-law and her daughter tells me there was one similiar experience for them many years ago causing them both severe headaches.
Her daughter is sick right now and has to take gamma globins to strengthen her immune system. She has had 6 bouts of pneumonia in only three years!
Mother-in-law suffered bouts of direahea, and constipation, asthma, and in the end she had mental confussion, and heart congestion

But what I have seen is no virus for my husband and two children - just the reactions to their vaccines.

If a damaged gut makes him stim, allergies or intolerances cause him to be sick, vitamin deficiencies took away his voice, sense of smell and made him sensitive to noise. If he has metal toxicity and nerve damage, and pursuing the correction of his physical health means he loses those "traits of autism", then it wasn't "autism" in the first place, it was nerve damage, allergies, illness and poisoning.

In anyone else, it is expected that a parent would treat illness, allergy, nerve damage and poisoning. I'm doing what would be done for someone who wasn't damaged so badly as to take away their voice and what would be considered minimal for someone who had a stroke or metal poisoning that caused loss of speech.

Just because it's called autism, it doesn't mean we withold proper health care based on what an individual needs.

If treating the physical illness and damage means they "recover", and autism is non-recoverable, then maybe it shouldn't be called autism, but that's the word we've been given.

I take one day at a time, one illness at a time and address it. If his body and brain begin to function in ways that cause him to lose symptoms, then he's healing. I don't always call it recovery. I call it "Finding Eli".

Over the last year he has gone from Thomas the Tank Engine to Superheros to GI Joe and now to Transformers. He sings the theme songs, finds clips on YouTube and has learned to control his hands enough to "transform" those little bits of colorful plastic by following the package directions, even though he still can't hold a pencil.

Today he went to see the new Transformer's movie. A bag of puffed rice as his popcorn substitute, a cup of his "special" juice and some home-dried fruit snacks in hand, he would call out "Transformers, Rollout!" at appropriate moments, and was gleeful when the old transformers were found "Mummies!". And afterward when he kept repeating "Transformers costumes. Want Transformers costumes, PLEASE!" and his mom called to ask, I told her they were already on the way. She turned and told him "Gramma says they are coming on the UPS truck" his reply was a jump, a whirl and "That's AWESOME!".

Not bad for a kid who once banged his head, didn't speak, never slept and smeared feces.

I realize we are very lucky. He could have been less of a responder, but a responder he is. His body stops doing things and begins to do them in an ordered way. Is it recovery? Is it evolution? or is it just the restoration of the integrity of what the human body and brain were meant to be...HIS body & brain.

Does he want to be cured? Don't know. Haven't asked and he hasn't volunteered an opinion. Are we "curing" him, or just giving him what he needs most after love? Looks that way.

...But I will say this - it sure looks like to me that he doesn't care about whether he gets the food everyone else does, or that he cares about taking supplements or getting blood draws, because the healthier Eli we've found so far is very, very busy being 7 years old.

Thank you all who have left supportive and helpful comments. They were very insightful. It is reassuring to see that I've opened up some badly needed dialogue about the misconceptions of Aspergers that had previously just been swept under the rug. Obviously, this is not an issue that will just go away; I think I know what my next article for Age of Autism may be...

Mr. Kulp,
I would like to thank you especially for your response. I understand that comment was in the context of an emotional email exchange you had. Dan Olmsted told me it was an editing error that let the comment through, so Age of Autism did not knowingly publish that remark. You can be rest assured from this post, however, that this mistake will not happen again.

All told, what you did by sharing your experiences was very admirable. I hope you do not feel that one bad remark overshadowed everything else you said because I know what you are going through and wish you all the best in finding someone who will treat you. I also hope you continue to contribute to Age of Autism, and help dispel the myths of neurodiversity.

Hi Roger,

I had asked you when I commented on your “A "Refrigerator Mother" Adult with Autism Speaks Out,” about your vaccine history. I know you have described regression on fevers and illness as your understanding of your medical issues but as the Hannah Poling case showed, as well as other vaers reports/legal cases and current growing research, it is not unheard of that vaccines could do the same.

Also, you posted:

"It is no different than somebody saying that nobody with autism ever had to deal with complex medical issues before the vaccine business started in the late 80s.There is a lot of ignorance to go around.Thimerosol had been in vaccines since 1931,BTW."

I'm not sure what you are trying to say -- maybe that because thimerosal has been in vaccines since 1931 that they/it cannot be the reason for "complex medical issues" happening in the late 80's?


Please enlighten me and can you answer the questions below, if you don't mind as it is helpful to examine the "environment" of a diagnosis- so from my prior post:

- your parent's occupations
- your vaccine history

Thanks much.

If there was a big red switch marked "NORMAL", and you could flip that switch to make your ASD child "normal" -- what parent wouldn't flip the switch?!

If you wouldn't, you aren't "celebrating neurodiversity", you are an unfit parent.

It's one thing to count our blessings and to love our ASD child unconditionally. It's quite another thing to FAIL TO TAKE ACTION to "heal", "treat", and "cure" that child.

Each parent has to use his/her judgment about what treatments to try, and so forth -- and to make sure that his/her motivation is to help the child and not to serve your own ego.

But to do NOTHING, in the name of "neurodiversity"? That is child neglect, plain and simple. Just like if your child had a broken femur sticking out of his leg and you didn't take him to the doctor.

However, the NDs still play a valuable role. It is good to have their voice as part of the discussion -- because it helps keep us "real" about our goals, and balancing the burdens against the benefits of any given treatment, and to realize that we may not obtain 100% "cure", and our child can still have a good/happy/meaningful life.

And to the extent that the NDs' do-nothing attitude irritates us, then we can thank them for giving us fresh motivation to find the cause(s) of, and cure(s) for, Autism.

Just like someone telling Lance Armstrong that there's no way he can outride these guys who are 15 years younger -- it just motivates him to ride that much harder.

Roger;
Can you find just a general doctor that medicard will pay for, and then ask to be sent to a rhuematologist? Have you tried a rheumatologist?

I had a "refrigerator mother". My mother was emotionally cold. She played board games with us, but she never shared anything about her past, she didn't hug us, show us affection, or compliment us much. She was a perfectionist and needed to be constantly in control. I used to hate her. Then I grew up. I realized she didn't know how to love, that it wasn't that she didn't love me. Her mind was somewhat "mechanical" in her experiences with the world, instead of emotional. She lacked empathy.

I spend a lot of time trying NOT to be a refrigerator mother although being emotional and empathetic does not come naturally much of the time. Although never diagnosed myself, I can certainly relate to the people with Aspergers out there.

If a child was an adult and the adult started stimming, became attracted to spinning objects, had no eye contact,and could not speak - the medical people would say, "OH STROKE".

Then they would help get rehabilitation! AND they would try to figure out why or what caused the stroke and make sure it will not happen again or continue to do it.

Not so for babies, they, with their parents are left in limbo.

Personality disorders (I like that) yeah, that and for others its a brain injury or an autoimmune disorder is what is really going on!..

This is important to understand because a young mother trying to get help and going from doctor to doctor is going to hear from someone that she is wasting her time and then she gets to hear some tale about some quirkey uncle or even hear her own mother say,

"Why grandpa was like this and there is nothing wrong with this child. If you keep this up your are going to ruin this child's self esteem! There is no need in this poor child having to take those old test or hear about all the negative things these doctors are saying about him. There is absolutly noting wrong with him that wasn't wrong with grandpa. You are going to keep running to these doctors till you break your family up."

And she is right about self esteem because many medical people seem to say some pretty ugly things in front of these children. I know because they did to mine!

Wow,I am too sick to deal with this stuff.

Hi Jake,I'm glad you frequent Johnathan Mitchell's blog.I'm sure you read my frequent posts there,and at Harold Doherty's blog. Harold makes the same point I do,about those with Asperger's.As you know,his son,has autistic disorder with profound intellectual disability,and is always going after those with Asperger's for the same reason.


"I have to admit that I am jealous of the stories I read on other blogs: attending school, eating in restaurants, participating in sports, working on friendships, having conversations. I want my son to do all all these things. I don't want to minimize other family's challenges. I know all families with autism struggle with the disability, and it is painful. There is nothing easy about it. But I still wish my son could do the things that other children with the same "label" are able to do. So in my mind, not all autism is equal.

Then I wonder. Is that part of what the disagreement is about? Is the neurodiversity group speaking from the high-functioning end of the spectrum? Is the pro-cure group coming from the low-functioning end of the spectrum? Do we really understand each other? We are all talking about autism, but not all autism is equal. Do we really understand the challenges of each other's children? It's like we speak the same language and use the same words, but is reality being communicated? Whos on first. Whats on second. My child has autism. So does mine. Sounds the same, but it isn't. Not all autism is equal."

http://www.arttocureautism.com/art/2006/03/not_all_autism_.html


My autism has always been like someone with autistic disorder,but without intellectual disability(According to some criteria this is true high functioning autism.),but with all this other medical garbage.There is no question I identify with the lower functioning end of the spectrum.I am just like someone with autistic disorder,in that I have little,if any,of those "cold impersonal" issues.I am often barely verbal,though.

I have suffered two major regressions as an adult,one brought on by pneumonia,one brought on by meningitis.As an adult,a regression means the severity of your autism reverts to where it was when you were a young child,but your adult intelligence remains intact.The severe phase lasts about two years.

My last regression was in 2007.I only began to recover from it in October.Prior to that it had been a number of years since I followed what was going on in autism.Both neurodiversity,and most of what had been going on on the biomed side for me were all brand new for me.It took months of reading blogs and message boards to find my bearings.

If there are those with Asperger's who have bowel disease,and other serious medical problems,you don't hear about them.ND provides the only picture of Asperger's you see.I blame those with AS for not getting the word out about their medical issues.There are doctors and researchers who would like to know too.If you saw the Maine CDC presentation with Dr.Tim Buie,in the Q&A section,he was asked if bowel and other medical problems were spectrum wide,and he said we simply don't know,and more studies should be done.

Jake,I read a lot of autism blogs.you are the first anti-neurodiversity Aspergerian blogger I have ever read.It is no different than somebody saying that nobody with autism ever had to deal with complex medical issues before the vaccine business started in the late 80s.There is a lot of ignorance to go around.Thimerosol had been in vaccines since 1931,BTW.

When I was a lot more naive about this stuff, I actually posted a couple of times over at Aspies For Freedom,and Wrong Planet. Otherwise known as the land of the self-diagnosed
http://www.ridiculopathy.com/news_detail.php?id=1725

My main interest at first was to try to learn if I was unique,and if anybody else had medical issues like mine.What happened was I was chased away for "fear mongering".At both boards,I was accused of painting an unrealistic picture of what autism was to scare them into wanting a cure.

As for my post,it was a desperate cry for help.I am trying to get to either Cleveland or Massachusetts General.I cannot do this without a local doctor.I do not have one.I have been trying for the past nine months to find one.I have had every possible organization you can think of,with no luck.A lot of doctors who treat medical problems in autism will flat out refuse to see adults. Another issue that really needs to be addressed.

This was the sole aim here.To help get me a doctor and get to Cleveland or Boston.I am in desperate need of having the cause of my medical problems investigated,and treated if possible.Jake,you have described the treatment I have received from doctors perfectly.You seem to get it more than a lot of others,especially those in the medical professions.

There are others out there on the spectrum who have medical issues,who have been just as mistreated by doctors.One woman I met online recently,who has HFA,and was diagnosed with mitochondrial disease after her children were,who has just as horrific a history with doctors as I have.

Heart failure is very common in mitochondrial,and other myopathies.Thirty years ago,I was documented to have both a conduction defect,and an unspecified cardiomyopathy.

http://www.mda.org/publications/Quest/q62cardiac.html

My post was taken from an email exchange with Kim.I wish she had sent me a preview of exactly what she was going to publish before she did.I knew that line was going to cause trouble.As soon as I read it in the post.

So did my post generate any offers for help ? Just one,from a DAN! doctor,who never responded after I told him I was unable to pay him,because I was unable to work and on SSI.(Because of my autism.)

livsparents said:

"You'd be hard pressed to find anyone in the ND crowd that is advocating not treating medical issues. As a matter of fact, many are strong advocates for changing mainstream discriminatory practices and behaviors that ultimately deny the treatment of legitimate medical conditions for autistics."

I have not found that to be true but if it is a new phenomenon, then it is about time but I would venture it is because of the "bad press" they have received and not honest and compassionate insight.

You also said:

"I would submit that 'medicalizing' autism trivializes the symptoms of autism themselves; reducing autism 'traits' like stimming, lack of eye contact and socialization issues into something that can and should be 'cured'."

Sounds like you are saying that autism is a set of symptoms, or "traits" randomly listed just "because" they have *autism* -- when in reality, autism for most is a medical condition that has been misdiagnosed as a mental, psychiatric issue. Those "traits" - "stimming, lack of eye contact and socialization issues" have many biomedical causes and that is what parents, researchers, and doctors are looking at and trying to treat.

As bacterial, fungal, viral, and heavy metals ( oxidative stress) are addressed, their impact on mitochondrial, neurological, gastrointestinal, and immunological (inflammation)can be assessed.

You further stated:

"The lack of a dividing like of what is defined as 'cure' and what needs to be 'cured' leave many many parents feeling that these 'traits' are ONLY symptoms to be 'cured' and ONLY indications that they are not done 'fixing' their child."

I am not sure where you are getting that from or why what any parent does for their child diagnosed with autism == *child in need of medical care*, is any of your concern or business. Autism is not some special club where you must stim and have a secret language to get in the clubhouse. It is a serious medical condition that can worsen if not treated - ie, inflammation >>> seizures.

I will add that as we learn more about the oxidative stress connection to autism, the more apparent is is that autism has no business being in any DSM publication.

Thanks Jake for some sanity.

Just because someone is vocal, it doesn't mean we have an obligation to listen. I regularly hear people criticizing my church and political philosophy, as is their right. However, being secure in my beliefs and values, I ignore them, as is my right. It is the same with those who may criticize the biomed treatment we choose to give our children. We know what we are doing is in their best interests, if that bothers other people, that is their problem.

I'm tired of hearing how my HFA son's mental fog, aloofness, and irrational tantrums are somehow "gifts". Nonsense. They are impediments for him towards living a happy and productive life. Why in the world would a rational being give such claptrap even a second thought?

Joseph responded almost immediately to GFCF, methyl B12 and improved nutrition. He now answers to his name on the first call. He spontaneously walks up to adult neighbors and chats with them. His 3 AM tantrums have stopped completely, thus making the entire household happier, more relaxed and pleasant. His teachers tell us that he is one of the brightest kids in his pre-school class; previously we had been told he would sit in the corner and growl at other children when they approached. Some gifts.

We live in a world where people are afraid to state obvious, common-sense truths for fear they might offend or be judged. We know our son is happier now than he was before. We know he will lead a more productive life when he is alert, attentive and learning. We know he will more have enjoyable social relationships when he talks with others instead of growling at them. These are obvious truths; to say otherwise is childish fantasy.

This disagreement about the autism spectrum and disability will continue as long as autism is defined by behavioral characteristics in the DSM. Diagnosis is far too subjective. Defining autism properly involves a paradigm shift from mental disorder to medical illness affecting (among other things) communication, cognition and social functioning. Incidentally, it seems to me that many ND's are self-diagnosed. If so, they lack credibility and their opinions aren't worth my time and attention.

Jake, I appreciate your perspectives and always enjoy your posts. Keep writing! You're an inspiration to those of us who continue to hope that our children might reach your heights.

Thankyou Mary- This is an excellent comment. WE simply must not trivialize the experience of any child or adult on the autism spectrum, just because that person initially appears to us to have no or few problems. And I think we are going to have to make this point over and over in various ways.
Years ago, I thought my friend was foolish to refer to her son as autistic when "all" he had was Aspergers. After all, he was so verbally brilliant, so imaginative. Well, the years have passed. He has been bullied; He has needed adults to help him focus in classes:He hasnt had friends (no siblings either) ; He is poor at math and in English he is so imaginative that he cant focus on writing a coherent answer for an exam. We hardly noticed his lack of eye contact as a child, but now it looks weird on a young adult. This is not a life that one would wish to have and this young man has to battle on.
We must make it our mission to tell the world what all this means in terms of human experience and suffering. Its a little different in some ways , of course, but this truly is a second holocaust of millions of suffering children around the world and many more millions of people who turn their backs or are ignorant of the suffering.

But by the same token that you say that the ND trivializes medical conditions, I would submit that 'medicalizing' autism trivializes the symptoms of autism themselves; reducing autism 'traits' like stimming, lack of eye contact and socialization issues into something that can and should be 'cured'.

The lack of a dividing like of what is defined as 'cure' and what needs to be 'cured' leave many many parents feeling that these 'traits' are ONLY symptoms to be 'cured' and ONLY indications that they are not done 'fixing' their child. That mindset can leave a higher functioning child emotionally scarred and a parent wasting valuable time and resources working on fixing these behavioral issues when they could be spending time working on learning and communication issues.

You'd be hard pressed to find anyone in the ND crowd that is advocating not treating medical issues. As a matter of fact, many are strong advocates for changing mainstream discriminatory practices and behaviors that ultimately deny the treatment of legitimate medical conditions for autistics.


"Disability" is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term "disability" with "disadvantage".

Also, the term "high functioning autism" is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps "HighER Function Autism" might make more sense because it is not self-contradictory. (We then wouldn't need the redundant "Low Functioning Autism" label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won't go into here. However, we are stuck with it. Let's get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability -- and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

"The NDs advocate against a cure, only see society’s reaction to autism as a problem and not the condition itself, and often try to prevent people on the spectrum from getting help."

I must say that this particular tidbit is something I find really hard to stomach.

When my son was in preschool, one of his classmates had aspergers. I was secretly jealous of his mother because she appeared to have less issues to deal with. Well, one day I watched her son play soccer and he kept kicking the ball in the wrong direction. He had no idea where he was or where to hit the ball (just like my son.) He also started terrorizing my son by blowing in his ear and hitting him. I soon realized that he had just as many issues as my son but he had much better language. Aspie's have autism with language.

Thanks Jake-

It's nice to know there are people with aspergers, and autism for that matter, who don't subscribe to and perpetrate the ND goofy ideals of what aspergers/autism is and isn't- and what should and shouldn't be done about it.

It's pretty hard to muster up understanding and care for people who have this in your face, condescending snotty attitudes.

Those are the kind of Aspies I have encountered online.

My son has autism not aspergers. He seems a lot like Deb's son. I know that kind of autism and not aspergers.

I'm learning about the difficulties of those with aspergers. And in some ways it seems more difficult to deal with than the autism my son has.

Yet, the message from the ND camp is one that is confusing and absurd. One minute it seems a person who has aspergers is perfect just the way they are, as if aspegers is some cultural thing or a religion of sorts. And, as you said the only problem with having aspergers is how society treats you. And the next minute they blame their aspergers for some shortcoming, or their bad behavior online for example, or some problem in their life.

It makes no difference to me what a person with aspergers thinks about their own aspergers to me. Do you think you are disabled, or not? I just don't want them telling me what I should or shouldn't (mostly they do shouldn't) do with my kid with autism. And if I had a kid with aspergers I'd feel the same way. My kid, our lives, my decisions.

Shut up, and respect my right to do what I think is right for my child, and butt out of our business.

Jake, you have done nothing but raise understanding to asperger/autism related issues in my eyes.

So many of us (parents) appreciate your perspective.

I'm sorry you were made to feel you needed to justify your disability to the readers of AoA.

As always, I look forward to your next article.

Okay, I am confused.
So may some one can help me out here?

No body feels like they really fit in even those with great personalities for example: My cousin had a personality that people loved! At his funeral they could not fit the people that attended into the building, many stood in the parking lot to say their good byes. He was an alcholic! He drank himself to death. He did not really fit in.

So when does a person say they have aspergers or just quirkey personality taht don't fit in? Example my grandfather. Grandfather became known throughout the region as the chicken man. He made his living raising and selling eggs. He would catch the Grey Hound bus and go to the Univerisity of Kentucky to learn about the egg business. He was focused, intelligent! He thought, breathed, dreamed and worked in the egg bussiness, and became wealthy. As a small child I had to swing on his arm to get his attention, and get him out of his world to speak to him. But he could speak very well if he needed too.
One day my grandfather after listening to a converstion at the country store walked home in deep thought. The next morning he woke up and some one had stolen his truck. He told my grandmother who called us in a panic. My Grandfather called the police who came out and took a stetement. That evening Grandma looked out of her picture window in the living room and down in the valley, far below sat my grandfather's truck by the country store. Was my grandfather aspergers?

My son had a stroke a few hours after one of his vaccine shots. It took him a long time to speak a word or two and years to put a sentence together and more years to communicate a thought. Today he speaks in a monotone. He also lost the ability to walk and had to relearn today he has loose muscle tone and flat feet- caused by the brian injury. He also has bowel trouble, epilepsy, and autoimmune disorder not dignosed or recognized by the medical people. Yet, he has frequent high unexplained fevers, sinus infections, ear canal infections. He is dignosed with aspergers, or development delayed disorder or what ever.

Maybe all this is wrong? Maybe we should forget the word autism, throw it out and call it what it really is. A brain injury with an unspecified autoimmune disorder? I don't know? Maybe a vaccine injury (not that will get us out the front door with the medical people)

Somebody once referred to my condition as Topic Finding Disorder. I would like to say first of all that although he was not a Doctor, I respect his diagnosis and opinion as much as or more than any I’ve received from a Doctor or a Pshrink.

I agree with the ND in that for those high on the spectrum, often it is the reactions of others to the condition more so than the condition itself that is the problem. That, however, is as far as my agreements with the ND community go. I don’t believe for one minute that it makes sense to avoid or to deny treatment for a problem with obvious physical as well as behavioral consequences. It was bad enough seeing my three year old sitting alone on our lawn watching as ten or twelve other children her age played ball across the street. It was worse seeing her routinely withholding her bowel movements for ten days straight then losing control of her bowels before she was able to make it to a bathroom, on top of all of that.

And I do believe that many in the ND community are in the business of helping those who would sweep any connection between vaccines and autism under the proverbial rug.

Yes I’ve experienced the trivialization of this condition. (I’m inclined to refer to it as a condition rather than a disability when referring only to certain behavior aspects, such as the inability to make small talk.) How many times I’ve heard “You can talk to people if you really want to. You’re just not trying hard enough!” It would be as if people said to someone who was in a wheelchair because they were paralyzed from the the waist down, “you know you can walk down those stairs, if you really try, you’re just not trying hard enough!”, and then looked upon them with disdain when they remained in their wheelchair. It would never happen. And yet I believe that in essence that exact thing happens daily for those high on the ASD spectrum.

I’ve experienced the trivialization and I’ve experienced the discrimination, and I’ve seen my own children go through it.
I was hired as an engineer for a consulting firm when I finished college. Two days after I started another engineer was hired—about the most gregarious person you could imagine. He was hired to work in the same department as I was. He was sent out into the field to work with other engineers and contractors from about day one, and I was left inside the office to fill out forms for the better part of my first week there. I was told some time later by another engineer at the firm that the person who hired me hired me because he felt that a woman engineer would be more likely to have better social skills than most of the men they’d hired. Lol you can imagine his surprise after my first day or two in the office. Well, anyone who knows me at all well can imagine.

Look at most any job want ad. Try to find one that doesn’t say ‘must have good communication skills’. I think that what most people mean by ‘good communication skills’ is ‘must be outgoing and a good schmoozer’. They do not mean ‘ concise,articulate, fair and honest’.

Try to imagine how it feels to be asked by your office secretary if you are going to be going to the boss’s party. The party you hadn’t heard anything about. “Oh you didn’t get an invitation? I thought EVERYONE was going!”

Before that I worked for a firm in the summer as a co op student. I found out from the secretary there, many years later, that when I’d given out my supervisor’s name as a reference to look for other jobs, prospective employers had been calling him and he’d been telling them he wasn’t happy with my work. I’d asked him, before using his name as a reference, if he would mind if I did so. He had never once spoken of his displeasure with my work, to me. Even after I’d asked him to be a reference for me. I still to this day have no idea why he was unhappy with my work. I believe that it had something to do with my inability to make small talk, but can’t really say for sure or speak for him. At any rate it seems to me to be a very NT-ish thing to do -- to speak about others behind their back without confronting them face to face.

I learned a long time ago to try to avoid the people who care about personality over character. I’ve told my children that there are people who don’t mind if you don’t chit chat. And that there will be more and more as they grow older.

I remember not too long after my oldest child’s preschool teacher expressed concerns about her development because she wasn’t interacting with the other children, I read an article in my local paper’s Sunday magazine. It was about a boy named Paul in the state of New York with asperger syndrome. I think he was about eleven years old when he and his parents were told by his teachers and school administrators that he could no longer remain in the gifted program. “He’s just too quiet”, the parents were told.

It’s hard not to remain a tad bitter when I think back on things like this.

Hi Jake,

I reposted this on the Autism Speaks forum, if you want to see what kind of reaction it gets there.

Jack

Thank you for these interesting insights. My son is five and has been largely recovered and has mild residual problems. Although we are very grateful, this recovery was at an extreme financial, emotional and professional cost to our family. We have no regrets however. We will continue to support the recovery that we credit to biomedical interventions and the therapists who helped him to catch up once he was more available to learning. Nonetheless, I still consider him disabled. He still has attentional issues that require redirection and a host of other physical issues that require continued biomedical treatments. If he were to be completely recovered and show no signs of his earlier problems on a regular diet (he is still GF, CF, corn free, soy free and artificial color free) he still lost so much (as have we) and had to endure tremendous pain. Our whole family is changed from this experience.

Personally, I found the "Refrigerator Mother" Adult post extremely interesting but I must admit I cringed at the part where she basically dismissed my child's disability as nothing.

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