Saturday, January 02, 2010

Intellectual Disability Acceptance in the Autism Community

One of the major problems arising from the expansion of the "autism spectrum" concept since 1994, and particularly in the last decade, is the tendency to hide the straight forward, incontestable fact that an over whelming majority, approximately 75-80% of persons with Autistic Disorder are intellectually disabled or cognitively impaired. The concept of "autism" was expanded to include a large group of people who, by definition, do not have intellectual disabilities or cognitive impairment. This expansion resulted in a glossing over of the close association between Autism and Intellectual Disability.

Even an important study like the autism prevalence study recently reported by the CDC expressly obscures the high number of persons with Autistic Disorder who are also intellectually disabled or cognitively impaired by spreading that percentage along the entire spectrum:


"Data show a similar proportion of children with an ASD also had signs of intellectual disability, averaging 44% in 2004 and 41% in 2006."

CDC Counting Autism

The estimated number of persons with Autistic Disorder and Intellectual Disability would be much higher if the CDC figures had excluded persons with Aspergers, none of whom would, by definition, be intellectually disabled or cognitively impaired.  Assuming equal numbers of persons with Autistic Disability and Aspergers Disorder the percentage of persons with Autistic Disorder and ID would be  doubled to roughly 80%.

The 80% figure is consistent with the estimates made by the Canadian Psychological Association in its "Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006:


"Symptoms and Impairments:


• Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. 

Although intellectual disability is so common in persons with Autistic Disorder it is rarely mentioned yet alone discussed in the autism "community" and almost never discussed by the Neurodiversity branch of the autism "community. Neurodiversity bloggers and ideologues tend for the most part to be persons with Aspergers Disorder who themselves are not intellectually disabled,  and by some high functioning persons with autism. While both of these groups like to identify with the term "autism" and like to identify with historical figures who they speculate to have been autistic they do not like to identify with  the many low functioning autistic persons with Intellectual Disability.

It is common to read blog comments about  "awetism" and the "joy of autism", Autistic Disorder itself is a serious disorder which impairs the lives of many who actually live with it but for those who embrace the term autism ... well it is just plain .. cool.  Mozart, Einstein,  Orwell, Van Gogh ... are all speculated to have been autistic. In the most extreme case of such wild speculation that I have read  Jesus Christ  is speculated to have been autistic.  Yet the existence of the 80% of persons with diagnosed Autistic Disorder and Intellectual Disabilities are barely mentioned or acknowledged.

To the contrary, any portrayal of persons with Autistic Disorder as living difficult, challenging lives restricted by their disorder are subject to organized protest campaigns by some very high functioning persons with Aspergers Disorder.  Parents who speak openly about the challenges faced by their low functioning autistic children are maligned as being engaged in pity parties  or parades of woe, usually by the same very high functioning persons, often "aspies" who like to identify with autism. 

The fact is that approximately 80% of persons with Autistic Disorder, the original "auties",  are intellectually disabled or cognitively impaired.

Those who try to suppress this information are suppressing the most basic of human rights, the right of  every person to have their existence acknowledged by the world and to be known by the world as who they really are.

It is time, as we begin a new decade, for "autism" self advocacy organizations and Neurodiversity bloggers alike to start showing respect for the 80% of persons with Autistic Disorder and Intellectual Disability, stop denying their existence and stop being ashamed of the less fortunate members of their alleged autism community.

It is time for persons with High Functioning Autism and Aspergers to start accepting autistic persons with Intellectual Disability and recognize that their Intellectual Disabilities are not just  unrelated coexisting or comorbid conditions. Intellectual Disorders are a very real and integral part of Autistic Disorders. 



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23 comments:

Socrates said...

Where are your 480,000 Autistics in the UK with ID?

80% of (1% of 60 millions)

Autism Reality NB said...

Socrates, I made my point here based on reliable Canadian and US authorities.

Are both of those authorities wrong?

farmwifetwo said...

Not discounting the information provided, but I look at the younger and wonder if it's truth or the testing.

There's nothing "slow" about my youngest son. If it's mechanical, just give him a moment or 2 and he'll figure it out.

But what catches him is language. It would be like taking you or I over to China and attempting to learn the language - reading, writing and understanding. It's coming, lately quite quickly, but it's still difficult. The Risperdal has helped considerably - 0.25ml/2x's daily (min. dose there is) - taken the fuzzies away - but it's still a huge issue.

On a standard IQ test - which will be done shortly - he'll be retarded, I'm about 100% certain. BUT, they are also suppose to do a series of non-verbal testing, the outcome of which is unknown. The testing, and I've discussed it with the psychometrist, is IMO to learn how he learns... I'm not interested in actual values.

Even my elder's psychometry exam reads that his actual knowledge is higher than the IQ test value. Which IMO means nothing, the most important info given was his short term memory issues, which were also flagged in greater detail during a follow up S/L exam completed by the SLP.

Yes, you are correct, they ignore those that have intellectual difficulties, daily living difficulties, executive functioning, sensory, visual difficulties etc.... but the testing methods still concern me.

Claire said...

Farmwifetwo...could you tell me how Risperdal works for your child? Is it about anxiety? This has been recommended for mine (not autistic) and I am wondering about it. Thanks.

Socrates said...

Not wrong as in wilfully lying about the situation, but I say in all seriousness, the quality of the data presented in the report is open to question.

After spending a couple of hours going over your figures and other papers starting with Baird 2000, and 2006, I can't help but feel there's complete chaos amongst the professionals. There seems to be little agreement on any of the main points at issue. Even indeed where the boundary is, if there is one at all, between AD and ASD.


All I can say is that I get from Baird 2006, something like 20-30 per 10,000 with AD, and something like 70% of these with an ID BUT there's the whole other group which includes AS and PDD that amounts to around 80 per 10,000.

The 2006 study seems to be the main source for the provision of Special Needs education and I haven't heard of a single case of AD with ID in this county (Cambridgeshire, UK)that hasn't been found, registered and provided for.

So, I'm still left with the impression that in the UK we have about 20-30% AD with ID and 70-80% AD IQ>70 and AS and PDD.

Farmwife,

"they ignore those that have intellectual difficulties, daily living difficulties, executive functioning, sensory, visual difficulties etc"

A lot of people involved with Neurodiversity, ie Kev Leitch, Kent Adams, Casdok, have severely Autistic kids, and problems with executive function and sensory issues are very much a part of our Überintelectual Autistic disabilities.

You don't get a diagnosis of AS in the UK for being an expert on Star Wars.

Stephanie Lynn Keil said...

Around 11 my IQ was tested at 96 (with wide scatter between non-verbal and verbal with non-verbal much higher) but I was also sent to an institution. So what does that tell you about the value of IQ?

When I was younger it was lower, in the 70s/80s.

Now, as I am older, it is higher, especially depending on the test.

On a purely non-verbal IQ test it is very high. If I were to take a purely verbal test it would be pretty low.

I know for some people with autism it is low across the board and in those I believe that a true intellectual disability is present. If there is wide scatter than the "real" problem is probably mostly autism. If there is little scatter than that may indicate an intellectual disability. All of this is just my opinion and from my experience, of course.

This is not uncommon in those who end up becoming high-functioning: to have wide scatter. Perhaps scatter on IQ tests is a good indication for those who later may become higher functioning?

I don't know; just speculating.

But, there are always going to be those with autism who also have intellectual disabilities in addition to autism.

farmwifetwo said...

Claire, there's pretty much 2 types of drugs... stimulants and calmers.

Stimulants such as Adderall are usually used in cases of ADHD. Some children with ASD have ADHD as well and these work well. For my younger son, it took his verbal stim and made it completely unmanageable and all he would do is stand and finger flick in front of his eyes. Luckily Adderall and other stimulants are 12hr drugs. Hence trying them first... so by supper he was nearly "normal" once more. We called the child psych as soon as it started, and stopped the adderall immediately - that very first day.

Risperdal lowers dopamine levels. Therefore calming the system BUT, the body still craves some dopamine, hence the appetite increase. By lowering dopamine you lower aggression. Harming yourself, is a form of pleasure, a craving of sorts... headbanging, cutting etc so therefore Risperdal removes that craving and lowers the impulse to self harm. It also lowers anxiety levels. We used Risperdal for 2yrs - age 6 to 8 with my 10yr old for this reason until it rebounded, created these symptoms - he is now drug free but I now wait for the teen years and that may change.

The younger had considerable sensory issues. Not noise, but the kind you feel like you're crawling out of your skin and you just want to run. A sensory diet has helped considerably, the Risperdal has taken the edge off. We still spin, flap, bounce, stim... we can now pay attention when we need to. We couldn't pay attention in June... at all. It's taken the fuzzies away. Before it was very difficult to get the words out, like they were stuck somewhere inside, now they come much easier. Like that bend has been changed from a sharp bend to a slow gentle curve.

Risperdal is a long term med. There will be short term changes but many won't be truly noticable until 3mths or so have passed by. Risperdal like all meds have side effects. Risperdal will not remove all behaviour, but has allowed for teaching correct behaviour, and other tools like sensory diets to be more effective. Risperdal like all meds should be used in the smallest doses possible and removed every year for 2 to 4 weeks to see if they are still needed/working.

It got to the point with both boys we didn't know what to do anymore. It wasn't a choice we made lightly, or quickly. It's also a very personal one, and you may need to try other meds as well.

Ask lots of questions.

Adrianna said...

I feel that the concept of the autism spectrum should still exist from a medical standpoint. These conditions are related to each other. These conditions include similar types of impairments and their symptoms are either similar or distinct but related. It also is helpful for those whose condition changes with time and/or treatment. Most disorders (physical and mental) have degrees of severity as well as different manifestations. There are different degrees of scoliosis. There are different types of schizophrenia. Why not autism?

A person who takes medication for schizophrenia will still experience symptoms, especially negative symptoms, while in treatment. They are still schizophrenic, even though their functioning has markedly improved. Why not with autism?

However, each variant on the spectrum needs to have its own criteria and diagnostic tools. People who have these conditions need to be referred to as having these conditions, not as being "on the sprctrum." People who do not fit the diagnostic criteria for existing conditions but whose impairments are related should be classified as ASD-NOS. Again, we do this for other conditions. Disorganized vs. paranoid schizophrenia. Discoid vs. systemic lupus.

Actually, the criteria as they are, in my opinion, are hardly loose. Both Asperger's and autism have a list of symptoms and impairments you must have. If professionals could understand the criteria and stick to them, there would not be a problem.

The concept of a spectrum was designed to encompass all types and degrees of related neurological and developmental disorders. The key word here is 'disorder.' As in your having the disorder has result in clinically significant impairment in daily functioning. It was not meant to include all disorders with distantly related traits. Nor was it meant to include similar traits found in normal people that do not cause impairment in daily functioning. Some of these traits are potentially pathological if taken to an extreme, but in most people, they will be mild and not a cause of meaningful impairment.

In short, being a loner no more makes you an Aspie than being a rock collector makes you a hoarder. Both involve collecting. Both involve fixations. Both involve unusual interests. But collecting and compulsive hoarding are worlds apart.

Thomas Armstrong, Ph.D. said...

I agree that the neurodiversity movement has largely been negligent in including people with intellectual disabilities, as well as people with mood disorders, anxiety disorders, schizophrenia, dyslexia, and ADHD. All of these disabilities are included in my forthcoming book Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences (coming out in May, 2010). I've also got a blog entry on my neurodiversity blog which points out that if you use an alternative intelligence test (the Ravens Progressive Matrices) instead of the usual WISC, many individuals with autism and intellectual disabilities actually score 30-70 percent higher, taking many of them out of the ranks of intellectually disabled.

Marius Filip said...

The interesting part is even some Asperger's have intellectual challenges - without being disabled.

An example is the young man who talks about it in In My Mind video (http://www.youtube.com/watch?v=rbgUjmeC-4o).

Denying the link between autism and intellectual disability is ridiculous. The repetitiveness and rigidity of the mind - so much characteristic to autism - couldn't have left no traces in the ability to learn.

To me, even the figure of 20-30% that Socrates presents is frightening.

So, you have a child, you learn he's got autism (whatever form may be) and he's got 1/5 chances of being mentally challenged. Is this supposed to leave you undisturbed? Can you be happy about it??

Not only that. Even if your child might not be mentally retarded, he's got a fairly good chance of possessing a staggering IQ somewhere between 70 and 100 (that is, below average).

Let alone the socialization problems, the behavioral challenges, the sensitivity issues, the gastro-intenstinal deranjements - the works.

Quite fun, huh?

Awetism?

Lisa Jo Rudy said...

I honestly think we're talking about several distinct groups of individuals, each of which has its own very different challenges.

There are folks with very high functioning AS who are verbally competent, score high on IQ tests, but may have a very difficult time coping with the day to day challenges of human interaction and advanced life skills such as managing finances, staying employed, etc.

There are folks with moderately high functioning AS/ASD who are verbal and engaged, but may score all over the map on IQ tests depending upon their ability to engage with written/spoken material. These folks may be the ones who would score high on non-verbal tests, who can do a wide range of things, but are not able to leave home at 18 and successfully live independently.

And of course there are folks who are flat out disabled, with very compromised or non-existent verbal skills, and with significant intellectual challenges (or at least, such significant testing challenges that their true intellectual capability is unknown).

Problem is, there's no agreed-upon set of names to distinguish these groups from one another. Harold calls the last group "autistic disorder," and the first group "aspergers" - but I know there's an awful lot of border crossing. And the group in the middle really doesn't have a name (and I suspect they may be the biggest group - the kids now provided with PDD-NOS or HFA labels).

Lisa

Autism Reality NB said...

Lisa Jo

Unfortunately you have done exactly what I stated is done so often. You have obscured or denied the existence of the many persons with Autistic Disorder and Intellectual Disabilities. You refuse to accept Intellectual Disability as a component of autism. By autism I am referring to Autistic Disorder not Aspergers Disorder.

This commentary deals with Intellectual Disability. The terms I used are taken from the DSM IV and the figures I use are taken from the sources I cited the CDC and the Canadian Psychological Association.

It is a fact that persons with Aspergers Disorder ... BY DEFINITION ... DO NOT HAVE cognitive impairment or intellectual disability. The DSM IV states:

"(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood."

The CDC stated just days ago that "a similar proportion of children with an ASD also had signs of intellectual disability, averaging 44% in 2004 and 41% in 2006." Given that Aspergers Diagnoses are not given where ID is present then that figure relates to the Autistic Disorder/PDD-NOS category, the latter usually being an initial diagnosis as it was for my son before a subsequent evaluation of Autistic Disorder.

The 2006 CPA report referred to two groups "autism" and "Aspergers" and stated that approximately 80% of persons with Autism are cognitively impaired. It also stated with respect to Aspergers that "Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning."

80% of persons with Autistic Disorder are cognitively impaired. That is a reality that should be acknowledged and dealt with. It should not be obscured by combining it with Aspergers in our discussions.

Kent Adams said...

Part 1

I think what is missing here is that standard iq tests really don't measure functioning intelligence and iq tests for AD kids, at least in my kid's instance, can't measure intelligence because he won't cooperate with the testers. My son has profound learning disabilities along with Autistic Disorder. There are others with profound learning disabilities, even mental retardation that are not autistic. Do I believe this affects the vast majority of AD folks? Yes I do, which I base on my experience only. If it weren't for the patience of a couple of researchers who spent an entire day trying to obtain my kid's true IQ, he would most definitely be categorized as mildly retarded. However, the researchers knew the intelligence was there and they wanted accurate information so they spent 5 hours giving what would normally be a 45 minute test.

IQ tests, however useful, don't really measure someone's functional intelligence (i.e. they don't measure how someone solves a novel situation), which to me is a much better indicator of true intelligence.

I've written in other places about my AS support group, and much to the consternation of SOME in the ND camp. There are approximately 2 dozen in my support group. I'm the only one employed full time and I'm the only one that is married. Most in my group are still living with their parents and unemployed. Some work part time in sheltered workshops. Many self medicate with alcohol and few have friendships outside of the support group. The AS I see in my personal life bares little resemblance to what I see on the web for the most part. In my real life, those in my support group are highly verbal, have obsessions that at times make them completely dysfunctional and all have severe anxiety, executive functioning issues and the ability to socialize (I would include myself in all of those issues as well). If we measure their functional intelligence, it would be quite low.

Now, I see all the same in my AD son as well, with the exception that they are more extreme because of the frustration that comes from a severe language delay. In addition, he has self stimulatory behavior that I don't see as much in my AS group. The AS group has the same body behavior as the AD group of kids I've become familiar with. To be more precise, both sides of the spectrum tend to have unusual body postures. Both groups have sensory issues, with the more extreme being in the AD group. Again, this is from my personal experience.

Kent Adams said...

Part 2

I agree with your premise that AD is poorly represented, and in the case of SOME in the ND community, acceptance is only lip service. Like your prior post, I too have brought up the lack of representation of AD folks on ASAN's board to ASAN. I've been told one member does have AD but I find that hard to believe. When I questioned the lack of representation of AD, I felt it was received as hostility on my part. One person, not a board member, told me that they (ASAN) shouldn't support "affirmative action" that they should only have people that can contribute fully. Needless to say I found this quite troubling.

I have considered myself ND for a long time. I also believe in inclusion of autistics like Jonathan Mitchell and Drooopy into any policy discussion or places where autistic people are suppose to be welcomed. However, there is currently a litmus test for what type of autistics are "allowed" into "club ND" as there is a litmus test on your blog on what autistic voices should be considered as having value. Autcom's president resigned over excluding 2 autistics from their annual conference because 2 (I believe that's the correct number) board members were insistent that they be rejected.

I also don't believe the self diagnosed should have any input into policy discussions that affect autistic lives. This puts me at odds with everyone in the ND camp that I'm aware of. I've been accused of being a friend of yours Harold, being a friend of John Best's etc. That I'm a "mole" and I'm often considered a "hostile" influence in ND. My agenda is not always the same with the body politic of ND and I think that has to do with the fact that I talk about struggles with AS and the profound struggles I see in my AD son and the AD population.

I know there are others that hold similar views as I do in the ND camp but are too afraid to "voice" them publicly. But I would expect the same could be said for the cure camp as well. I see very little talk of inclusion, expansion of services and supports in the cure camp. But, I believe there are a lot of folks that hold these views and that these aspects of ND are attractive but fear stating them would ostracize them from their own cure communities.

I believe what is needed in the autism community is a Glasnost, a new way of thinking. I hold no hope though this will occur in the near future. Perhaps in the meantime, my side should strive to be more inclusive and your side strive to be more inclusive as well (i.e. only valuing opinions of people that agree with each side) and not make blanket statements about functioning levels or leave the impression that AS is so rosy.

I appeal to you as a father of an autistic disordered child that we can find some common ground, more common than you might think, but we need a new way of thinking to break through the ideologies of both sides. How can we build a level of trust between the two sides? I don't know.

Jean Nicol said...

Harold, I agree that we must recognize the great need to acknowledge the intellectual disabilities of the majority of those with "autism". In my 26 years of experience with teaching & advocating for those with autism, from toddlers to adults, two major problems exist: 1) the inappropriate use of the WISC-R to access the intelligence of someone who is non verbal &/or with a severe language/communication disability and 2) the lack of understanding of the role "autism" plays in the perceived intelligence, measured by the WISC, so that the person with ASD is treated solely as someone severely intellectually disabled. Thankfully I am hopeful this will not happen for today's children with ASD as they become adults with the improved supports in place today for children.
We need a better assessment tool than the WISC-R. For young children I found the PEP-R (TEACCH) to be very helpful as it identified cognitive abilities both verbal & non verbal. I like diagnostic-prescriptive assessment tools and ABA, had good success with this one and the TEACCH Program for children with ASD who were intellectually impaired. I have not used it for 7 years now so don't know what kind of advances have been made. THE NEED IS GREAT for recognition of the needs of this large group with "autism"; availability & use of appropriate assessment tools and programs to address strengths & ongoing skill development, prevocational & vocational training; funding to support these children, adolescents and young adults to be their personal best leading happy and productive lives as independently as possible - NOT TOO MUCH TO ASK - that's what we want for all our children. It's time for society to provide that for those with disabilities too.

Claire said...

Thanks FW2 for your response (thanks Harold for letting me ask here)...I have now seen 2 references to Rispredal used in "unusual" ways...rather than the "standard" anti-psychotic...I prefer parents' assessments to doctors' in these matters. In the end, I can't use it on the Chickie because the side effects include problems which she already has...so likely will be exacerbated by the drug. She also tends toward paradoxical effects...I'll never stand in judgment against a parent who "resorts" to drugs...God knows we do what we can with what we've got!!

Roger Kulp said...

Harold,I would like to learn more about what they mean by "intellectual disability".Are they talking about what we used to call mental retardation,or are they talking about multiple severe learning disabilities in the absence of retardation ?

I have always been in that latter category.

Socrates said...
A lot of people involved with Neurodiversity, ie Kev Leitch, Kent Adams, Casdok, have severely Autistic kids


Yes,and I find this fact very disturbing.I have yet to see any of these people give a satisfactory answer as to why they would embrace a belief like neurodiversity,that goes against their child's best interests.

You don't get a diagnosis of AS in the UK for being an expert on Star Wars.

Nor should you get one in the US,for ANY condition even remotely related to autism if you are a "expert on Star Wars".The very idea that there was an "autism spectrum" was a mistake from the start,and needs to be done away with as soon as possible.

Adrianna said...
I feel that the concept of the autism spectrum should still exist from a medical standpoint. These conditions are related to each other. These conditions include similar types of impairments and their symptoms are either similar or distinct but related. It also is helpful for those whose condition changes with time and/or treatment. Most disorders (physical and mental) have degrees of severity as well as different manifestations. There are different degrees of scoliosis. There are different types of schizophrenia. Why not autism?


This is bunk.The standard "triad of impairments" way of measuring autism is so generalized,and vague,it's no wonder there is an "autism epidemic".When you do not include developmental delay, intellectual disability,self-abuse eloping or seizures in the diagnosis,almosy anybody could get an "autism" diagnosis.Which is why we have people like Ari Ne'eman and Katie Miller going around calling themselves "autistic" while promoting an anti-medical progress agenda,that in the end only harms more autisic people.

Autism Reality NB said...
Lisa Jo

Unfortunately you have done exactly what I stated is done so often. You have obscured or denied the existence of the many persons with Autistic Disorder and Intellectual Disabilities. You refuse to accept Intellectual Disability as a component of autism. By autism I am referring to Autistic Disorder not Aspergers Disorder.


Harold you know as well as I do,to neurodiveersity,all autism is Asperger's.They can't see it any other way.

Farmwifetwo,I realize everybody is different,which is why we need to get rid of the spectrum.The same behaviour,like head banging,can have different causes in different people.I have found that it always increases after a fever goes away,or if I have a flare of something like a rheumatic heart flare.You are right about it being a release for pain,though.Control the pain,and immune problems,and avoid the foods that cause reactions,and you control the head banging without dangerous drugs.

Kent Adams said...

@Roger

"Yes,and I find this fact very disturbing.I have yet to see any of these people give a satisfactory answer as to why they would embrace a belief like neurodiversity,that goes against their child's best interests. "

Roger, if you would like an explanation and are truly interested, you can email me. Give me your email address and I will be glad to talk privately about this with you. Suffice it to say that on some days I'm not sure if I'm entirely ND based on how some people define ND. I have my own definition.

Anonymous said...

I have been diagnosed with Autistic Disorder, and am considered "MFA-HFA", but would you consider me HFA because I can type well and use a computer? I've had people tell me I couldn't possibly have Autism because I type nicely and can communicate via the computer without even thinking about the difficulties I have to deal with.

I do not have mental retardation, or what people call "Intellectual Disability" though I have a chunk of learning disabilities that makes it very difficult for me to do well in school (I do go to college, which is a struggle emotionally and physically for me.) I don't even know what my IQ is, but I know it's not that high, and I don't consider a high IQ meaning someone is extremely intellegent, I've met some of hte smartest people who's IQ is very low, and those who cannot speak but sign or write instead.

On top of having AD, I have SID/SPD (depending on what people prefer to call it.. Sensory Processing Disorder) and ADD which makes my life very difficult especially when I can't explain what's bothering me because sometimes I don't know what is wrong, I just react. I can't live on my own, because I can't hold a job. There are days where I can't talk because it's too painful, I bite myself during these 'times' according to my mother.

I accept everyone for who they are, whether they have intellectual disabilities or not and I never discount the problems those who are "higher" up on the spectrum have, and I don't discount the problems that those that are "lower" functioning have.

farmwifetwo said...

Anon - the point is you can communicate and that's what frustrates us that have children than cannot. That as adults may never be able to do so.

Yes, you may react "inappropriately" but IMO as long as that does not translate into harming someone else... I have no issues. The world has to deal with my youngest son's flapping, but my 10yr old's hitting when he was 5 or so yrs old was not allowed. He has been taught the same and knows how to behave appropriately.

Bottom line is that you can communicate. You can written or verbally (even with difficulty) make an informed choice. A choice about education, housing, finances, care issues etc. I dislike, and I know Harold does, those who like yourself that can make those choices... claim to be able to make them for all with autism. Including those like mine who cannot speak for themselves. They claim what they want, is what he has to have. Yet, what you want, may not be what Stephanie needs, or Ari needs or anyone else. To claim someone speaks for someone else is NEVER appropriate, no matter what the situation.

LFA or HFA, communication is key. As for how many are truly learning disabled IMO is impossible to tell as I posted above... how many are LD's, autism difficulties, language difficulties, inappropriate testing methods... I simply don't have an answer.

Anonymous said...

A choice about education, housing, finances, care issues etc.

I don't really make a choice about such things, I may make a choice about my education but I can't choose where I live, I do not have the 'skills' to live alone, and i do not have a job because once again, I lack skills that can help me keep one.

You don't know for sure if said child that is not verbal will never speak, only time will tell. There aren't a lot of nonverbal adults, those ones are rare. There are Autistics that use a computer, and type as you know a form of communication.

And for your information, I don't support Ari' Neeman, or any organization that's based on Autism.

I don't speak for anybody but myself, but there are times where my Mom has to make choices for me because I can't.

farmwifetwo said...

But you can choose to live with your parents or have your parents put you on a wait list for housing with long term care.... it's still a choice.

And if you choose to live away from home, in care, and had issues, you can still communicate with your parent about those difficulties and issues can be dealt with. Maybe not easily, but you can still communicate them even using a device/computer.

Yes, many can use a form of device if they are taught to communicate - IFF (if and only if) they are actually taught... Teaching takes time and money, which a lot of people don't have enough of and school's aren't interested in. But there are many, many who cannot communicate, with or without a device of some kind. I am lucky we seem to be crossing from simply mands/demands into "chat"... But as I know from the elder, chatter doesn't mean your question of "how was your day" will be answered anytime soon.

I don't belong to any "camp", I'm always surprised at those who do... since belonging takes away choice and flexibility.

Anonymous said...

But you can choose to live with your parents or have your parents put you on a wait list for housing with long term care.... it's still a choice.

-- Once again, you are wrong. Not to be nitpicky when I say that I only have *one* parent. If I had a choice as you say, I would have the abilities like people who have AS or who are not on the spectrum have and be able to care for myself and live on my own but I do not have that choice. My parent does not want me to live in housing with long term care because she has heard stories about them so her choice (for me, since I'm incapable of making life choices) is to stay with her, but when she dies I don't have a choice but to live in a home now do I?