Tuesday, November 28, 2006

Fabrications About Autistics

In this post I would like to provide three clear, documentable examples of outright fabrications about autistics. For whatever reason some people seem to be under the impression that autistics are fair game when it comes to making up facts and statistics.

1. Rate of Institutionalization

In Instant Institutionalization, Michelle Dawson informs us of a claim about institutionalization rates from a "fact sheet" that is disseminated among Canadian politicians:

Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members.


Michelle Dawson notes that the 90% figure cannot be supported by peer-reviewed science, and challenges autism advocates to provide a supporting citation.

I wanted to go further than that and verify if the figure can be supported by administrative data. Unless culture in California and Canada are considerably dissimilar, we should be able to learn something about institutionalization from the California Department of Developmental Services quarterly client characteristics report.

Before looking at the data, I should emphasize that, as a rule, only individuals with autistic disorder are eligible for CDDS services. The data is not supposed to include those with PDD-NOS or Asperger's Syndrome. Further, I will look at data for adults, who by and large were probably diagnosed under DSM-III or Kanner's criteria, and who could not have been part of an ABA program in early childhood. Adults who at some point were in the CDDS system and decided they no longer required its services for any reason are obviously not included in the data.

From the Q3 2006 report, we learn that 3,089 autistic persons do not live independently or at home with a parent/guardian. The report also says that there are 7,015 autistic adults (18 or older) in the system. So at most 44% of adult autistics in California do not live with family or independently. The actual figure could be lower depending on the number of children who do not live at home.

Of those not living independently or with family, the vast majority live in Community Care. If we only count Institutional Care Facilities as "institutionalization", the figure is at most 4.75%. That's correct, less than 5%. It should also be noted that all of these rates are falling rapidly.

2. Severe Behaviors

There are people who go around implying that autistic children are, in general, little monsters who pose a danger to themselves and others. For example, Mark Geier stated the following in a Radio Liberty interview:

A lot of these kids are so severe, you know, they don't say a word, they attack everybody, they break their mothers arm. These are really, really aggressive kids.


Break their mother's arm? I wonder how often that really happens. The CDDS report won't tell us that, but it does have a category called "Severe Behaviors". From the latest report we learn that 16.31% of autistics in the system are classified as having "severe behaviors". That's roughly 1 out of 6.

3. Mental Retardation

Professor Meredyth Goldberg Edelson has challenged claimed rates of mental retardation in autism which are found in the scientific literature. This was recently reported in the press:

Goldberg Edelson reviewed 215 studies on autism, dating to 1937, which made 223 claims about the rates of mental retardation in autism. Only 58 of those claims were supported by data, she found, and most researchers stated their results without reporting how they measured intelligence.

Most of the studies that measured intelligence used tests that were inappropriate, Goldberg Edelson found.

"Many times, if the researchers had a child they couldn't test, they just assumed he or she was retarded and assigned a low IQ score," Goldberg Edelson said.


In the latest CDDS report we find that 28% of autistics of all ages in the system are classified as having some level of mental retardation. It's not clear how this determination is made. It is probably fair to assume there is some misclassification, and that a different type of testing would yield a different figure. In some cases a child may be presumed to be mentally retarded on the basis that he or she is unable to understand or comply with simple instructions. But the CDDS does have an "Unknown MR" category, which currently holds 6.75% of autistics in the system.

The issue is not that it is bad for mental retardation to be associated with autism. Mental retardation is a neurological difference which does not in any way invalidate disability rights, neurodiversity or self-advocacy. The issue is how easily facts and statistics are fabricated when it comes to autistic people.

39 comments:

  1. 'Damned Lies and Statistics' was one of the most helpful books I ever read as a youngster. Still stands me in good stead today.
    Cheers

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  2. You're counting adult autistics which I assume would include people like Andrews who can (more or less) take care of himself. A few years from now, you will be inundated with those kids who got more mercury and are much worse off. They're already in institutions because their parents can't handle them as young as 10 years old.
    You're jumping the gun on this and you know it. One more attempt to play with the statistics to convince people to harm their children by not trying to cure them. This garbage is so transparent I think you just trash the post.

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  3. Stop trying to bait David. David: I'd just ignore him.

    BTW, I think Dave Andrews has an Asperger's diagnosis? So no, he would not be in those stats.

    As usual, you make all sorts of claims you can't back up, John.

    By and large, adult autistics in the CDDS system were probably in the system as kids. Either way, someone needs to have been diagnosed before the age of 18 to be eligible.

    And if we look back to 1992 (the earliest data provided by CDDS if you ask), there's clear evidence that kids today are not more "severe" than kids then. In fact, the opposite is true. Basically, the way you think trends in autism work are the opposite of what they are in reality.

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  4. I read similar scare statistics ten years ago when my son was first diagnosed.

    Thanks for rebutting them. That does more to help the mental health of parents than anything

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  5. I'm just using Andrews as an example. He does claim he's autistic, not Asperger's. I could just have used you instead. Don't you claim to be autistic? You don't show much evidence of it in your writing, unlike Baggs or Dawson who clearly have problems.
    If your point about autism being less severe is true, how come they were never called "train wrecks" until recently? Surely, someone would have come up with a similar expression. I've seen the teenagers in institutions who behave just like babies. They never progressed. Yet, you keep claiming all autistics make some progress just because you and Andrews did. Perhaps, that not true for this brand of mercury poisoning misdiagnosed as autism.

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  6. Asperger's and PDD-NOS are part of the so-called Autism Spectrum. That's why people with Asperger's will say we're autistic. That's also because, from an advocacy point of view, it doesn't make sense to split the spectrum. From a scientific point of view, early language delay in autism doesn't seem to be predictive of much. Further, researchers are questioning whether Asperger's exists at all (due to the sloppy way in which the DSM-IV is written).

    I'm not sure what sort of evidence you expect to see in my writing. Some people choose to write about personal things, others don't.

    I think all individuals progress in some way at different stages of their lifes. I don't think anyone is frozen in time. But again, you make unaddressable assumptions upon assumptions based on refuted beliefs and an observation here and there.

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  7. Re: severe behaviours, I don't understand how it is in any parent's best interest to portray their child as a 'nightmare'. I can see how those who seek to profit from us may have a different agenda.

    As I wrote here once:

    I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her."

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  8. Hi Ian. That's true, but parents do say or imply that low functioning autism generally includes injurious behavior. Besides the obvious parents who say that repeatedly, Alison Tepper Singer suggested in the Articles of Understanding with GRASP that low functioning means having violent tantrums and being self injurious. That's yet another way to split low vs. high functioning she came up with there (which doesn't necessarily match the other ways people use to split the spectrum).

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  9. It is difficult to come by comprehensive statistics as to the numbers of autistic people in the UK but what is known is the number of service providers either in the private or voluntary sectors.

    The NAS has done extensive market surveys of the degree of provision and finds that only 3% of adults get any service at all, hardly squares with a 90% institutionalisation rate does it?

    As for dentistry, I don't think anyone keeps statistics as to the average number of teeth per adult autistic.

    I have an appointment this Friday, I shall be carefull not to bite the dentist, cos she took one of my teeth out last time I was there and it would not do to lose the rest of my gnashers would it.

    When it comes to the removal of teeth the only time I have been aware of total removal of (remaining) teeth is in the case of my mum when it was considered they were an infection hazard for an operation. She had lost the majority of her teeth long before that however. She once worked as a nanny for a dentist :)

    Larry

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  10. Joseph,

    There are pubmed studies on the living arrangements of adults with autistic disorder. Here's one article. J Intellect Disabil Res. 2005 Feb;49(Pt 2):111-24. You have to read the full text to get the stats, but

    Of adults with autistic disorder (i.e. not including Aspberger's or PDD-NOS) 63% lived in a non-family setting, while the remainder lived at home with their parents. Of the 86 adults living in a non-family setting, majority lived in a community residential programme (73.3%) or in a semi-independent living setting (17.4%). Other types of settings in which they lived include an institutional or hospital setting (n = 4), independent living (n = 2), a foster care setting (n = 1) or with another family member (n = 1). Thus, overall, 46% of adults diagnosed with autistic disorder lived in a community residential setting, and only 3% in a institutional setting. Clearly, it is a fallacy to state that "90% of afflicted individuals are placed in institutions and residential facilities", particularly if that figure is supposed to include individuals over the entire autistic spectrum.

    I have also challenged the authors of this fact sheet to substantiate this statement, and have had no response. I wonder if it was taken from the original chidren diagnosed by Kanner, of which a large majority did wind up in institutions.

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  11. Hi Joseph...

    "BTW, I think David Andrews has an Asperger's diagnosis? So no, he would not be in those stats."

    When I was seen by Prof Digby Tantam in the mid-late 90s, he stated that I the Asperger (F84.5) diagnosis made by the local psychiatrist was accurate for my current functioning level, but that I would have got the autism (F84.0) diagnosis had I been diagnosed as a child.

    He diagnoses on the basis of current level of ability to function at the time of diagnosis. He has, in many places, referred to AS as 'Asperger-type autism'. AS is a subset proper on the whole set of autistic states.

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  12. A little known fact about Donald, Kanner's first case is that he appeared to be hyperlexic rather than speech delayed.

    I wonder if he still has all his teeth?

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  13. Andrews; If you weren't diagnosed as a child, it's because you weren't a "train wreck". The fact that you were well enough to have been missed proves that you aren't autistic at all.
    Psychologists cater to people like you who go looking for a diagnosis to use as an excuse for their poor opinions of themselves. They're happy to let you cry on their shoulders while they pick your pocket and hand out the diagnosis so you have another excuse to avoid taking responsibility for your aberrant behavior (i.e. sending groin pictures to people).
    Get a haircut, sober up and stop using a phoney diagnosis as an excuse to be a weirdo.

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  14. Jennifer: Those numbers look similar to what we can find in the CDDS report. But again, once the children diagnosed today grow up, there's no denying those numbers will be very different.

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  15. If you weren't diagnosed as a child, it's because you weren't a "train wreck". The fact that you were well enough to have been missed proves that you aren't autistic at all.

    That is totally false as has been pointed out to you many times. Is Temple Grandin not autistic because she was not diagnosed as autistic when she was a child? That's nonsense.

    Very obviously autistic kids can be missed completely. My dad was thought to be deaf-mute until he was four. When he started school, he actually had to go with a shadow (my great grandfather) because he bolted out of the classroom. That was in the late 40s. I'd say he doesn't need a diagnosis of any kind today - it would be useless to him.

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  16. Joe;
    I have no idea what Grandin's life was like as a child. There are lots of strange people who work with animals.
    If she's not a feces smearing, hand flapping, jumping illiterate who can't fend for herself, she does not fit with the diagnosis of autism. People like her just confuse the issue and prevent children from obtaining the help they need.

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  17. If she's not a feces smearing, hand flapping, jumping illiterate who can't fend for herself, she does not fit with the diagnosis of autism.

    Good luck trying to get autism to be redefined this way. Very tough to do that because it was Kanner and Asperger who defined the term "autism" and their account was nothing like your definition. But maybe you can get psychiatrists to coin a new syndrome characterized solely by what you're describing.

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  18. A man who obviously doesn't know his arse from his elbow: "If she's not a feces smearing, hand flapping, jumping illiterate who can't fend for herself, she does not fit with the diagnosis of autism."

    I think I should point something out to this total waster, who obviously hasn't read a single set of criteria for autism in his life.

    -------------------
    Autistic Disorder

    Autism is a developmental disorder that typically appears during the first three years of life and may be the result of a neurological disorder that affects the brain. Autism is classified by the American Psychiatric Association as a Pervasive Development Disorder (APA, 1994). It is defined by symptoms that appear before the age of three which reflect delayed or abnormal development in Language, Social Skills and Behavioral Repertoire.

    Autistic disorder symptoms manifest themselves as follows:

    The person fulfills a total of at least 6 criteria from the following 3 lists, distributed as indicated:

    Impaired social interaction (at least 2):

    Markedly deficient regulation of social interaction by using multiple non-verbal behaviors such as eye contact, facial expression, body posture and gestures.

    Lack of peer relationships that are appropriate to the developmental level.

    Doesn't seek to share achievements, interests or pleasure with others.

    Lacks social or emotional reciprocity.

    Impaired communication (at least 1):

    Delayed or absent development of spoken language for which the patient doesn't try to compensate with gestures.

    In person's who can speak, inadequate attempts to begin or sustain a conversation.

    Language that is repetitive, stereotyped or idiosyncratic.

    Appropriate to developmental stage, absence of social imitative play or spontaneous, make-believe play.

    Activities, behavior and interests that are repetitive, restricted and stereotyped (at least 1 of):

    Preoccupation with abnormal (in focus or intensity) interests that are restricted and stereotyped (such as spinning things).

    Rigidly sticks to routines or rituals that don't appear to have a function.

    Has stereotyped, repetitive motor mannerisms, such as hand flapping.

    Persistently preoccupied with parts of objects.

    Before age three, the person shows delayed or abnormal functioning in 1 or more of these areas:

    Social interaction.

    Language used in social communication.

    Imaginative or symbolic play.

    These symptoms are not better explained by Childhood Disintegrative Disorder or Rett's Disorder.

    Associated Features:

    Learning Problem
    Dysarthria or Involuntary Movement
    Hypoactivity
    Psychosis
    Odd or Eccentric or Suspicious Personality
    Anxious or Fearful or Dependent Personality

    Differential Diagnosis:

    Some disorders have similar symptoms. The clinician, therefore, in his diagnostic attempt has to differentiate against the following disorders which need to be ruled out to establish a precise diagnosis.

    Rett's Disorder;
    Childhood Disintegrative Disorder;
    Asperger's Disorder;
    Schizophrenia;
    Selective Mutism;
    Expressive Language Disorder;
    Mixed Receptive-Expressive Language Disorder;
    Mental Retardation;
    Stereotypic Movement Habit Disorder.

    Cause:

    The exact cause or causes of autism is/are still not known but research shows that genetic factors are important. It is also evident from research that autism is associated with a variety of conditions affecting brain development which occur before, during, or very soon after birth. See Asperger's Disorder

    Treatment:

    Treatment of this disorder is very difficult and prolonged. Parents, teachers, and therapists work together in coordinated efforts to encourage social adjustment and speech development in the child. Positive reinforcement techniques such as offering food for appropriate behavior or language responses have been successful in promoting skills. Treatment may be in an institution, specialized school, day-care setting, or in the home. Family members may need counseling because they often feel guilty or inadequate. Treatments such as dietary modification and vitamin therapies, medication, music therapy, colored or prism lenses, auditory training, sensory integration, social skills programming, speech therapy.

    Counseling and Psychotherapy [ See Therapy Section ]:

    Intensive behavior modification programmes such as; Behavior Analysis and Applied Behavior Analysis (ABA).


    related books
    Asperger's Syndrome: A Guide for Parents and Professionals
    UK Support Groups
    Autism Unravelled

    3 Palmera Avenue
    Calcot
    Reading
    Berkshire
    RG31 7DZ
    UK
    Tel: :0118 961 5967
    E-mail: bluecat@autism-unravelled.org

    DSM IV
    299.00 Autistic Disorder
    ICD 10
    F84.0 Childhood Autism.
    F84.1 Atypical Autism.
    Chat Room
    #AutFriends
    PsychNet-UK Links
    Autism
    Page Updated
    21st August 2003

    http://www.psychnet-uk.com/dsm_iv/autistic_disorder.htm
    --------------------------------

    Imbecile, what bit of that set of criteria (which is the set that your son was diagnosed according to, since it is the DSM IV set used in the US) makes it necessary that someone has to smear shit, hand-flap or be unable to read and write?

    Time you learned to shut up instead of showing the world what a total pillock you are. You're an embarrassment to your son.

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  19. Imbecile: "Andrews; If you weren't diagnosed as a child, it's because you weren't a 'train wreck'. The fact that you were well enough to have been missed proves that you aren't autistic at all."

    The fact that you think you know what you don't really know (you just think you know!) what you're talking about says that verbal ability was wasted on you.

    Incidentally, the reason I didn't get the dx as a kid is the same one that autistic kids now don't get the dx ... it's administratively inconvenient. Nothing more, nothing less. Which is what Digby Tantam basically said.

    Imbecile: "Psychologists cater to people like you who go looking for a diagnosis to use as an excuse for their poor opinions of themselves."

    You really are thick, aren't you? Either that or you're a real hypocrit: hates getting nasty comments from others but loves to give them out himself. Personally, I think there's never been a bigger piece of garbage ever tried to take on a life of its own than you.

    Best of it is... you failed.

    Imbecile: "They're happy to let you cry on their shoulders while they pick your pocket and hand out the diagnosis so you have another excuse to avoid taking responsibility for your aberrant behavior (i.e. sending groin pictures to people)."

    You're the one obsessed with my groin and therefore obviously wantign the picture (which you will never get, I can assure you!). Time you learned to be responsible for your behaviour. That or commit suicide and give everybody here a fucking break.

    Imbecile: "Get a haircut, sober up and stop using a phoney diagnosis as an excuse to be a weirdo."

    How's about you go play marbles on the interstate nearest to you? You'll do your son a hell of a lot more good by trying that than you have done so far. My dx is real, whereas none of us here knows anything proper about your son's dx. You could be lying... you usually are.

    Let's face it, John... you have no clue how to conduct yourself: you hurl insult after insult at people but expect people not to retaliate (and when they do you go crying your fucking eyes out to the blog administrators telling them that I called you something nasty... what a frigging wuss!). You have no respect for anyone: I bet you were shifted out of the military because of that. I can't see the US Navy being thrilled about your conduct here, John.

    How much does JBHandjob pay you to be such an imbecile, John ?

    Whatever he pays you, you went too fucking cheap.

    LoL

    You never learn, do you?!

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  20. Joseph: "That is totally false as has been pointed out to you many times. Is Temple Grandin not autistic because she was not diagnosed as autistic when she was a child? That's nonsense."

    No point talking to him trying to teach him anything... he has one agenda: to be a total pillock, and that includes insulting people. Something he can't stand when folk do it to him.

    He's an embarrassment to his son.

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  21. Andrews; Your obsolete textbooks don't paint an up to date picture of autism. I wasn't in the Navy. Once your degree is no longer pending, you may learn how professionals in the real world keep up to date in their field. But, since psychology has nothing to do with autism, it's none of your business.
    I'm changing your diagnosis from Asperger's to Weirdo. People with Asperger's are much more intelligent than you. I'm sure they don't want you damaging their reputation.

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  22. Capt Arse: "Andrews; Your obsolete textbooks don't paint an up to date picture of autism. I wasn't in the Navy. Once your degree is no longer pending, you may learn how professionals in the real world keep up to date in their field. But, since psychology has nothing to do with autism, it's none of your business.
    I'm changing your diagnosis from Asperger's to Weirdo. People with Asperger's are much more intelligent than you. I'm sure they don't want you damaging their reputation."

    Yet more shite from a source of nothign but shite.

    Well done, Arse... you really know how to make yourself look ridiculous.

    Is that what your MPA's in?

    Time you got a life.

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  23. Ok, that's as far as I'll allow it. From this point forward I will delete any messages that are part of the flame war between John and David. That also applies to subsequent posts in this blog, including any attempt to bait David Andrews.

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  24. John,

    I'm sorry if you don't like to accept reality, but the reality is that the large majority of autistics suffer no mental retardation, do not exhibit severe behaviors, and most notably do not end up in institutions.

    That's true of adults, that's true of children. I understand how it completely disrupts your personal agenda of getting the world to pay up, but that's the hard truth.

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  25. Mouse; You are obscuring the facts by including Asperger's and HFA with the "train wrecks".

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  26. This comment has been removed by a blog administrator.

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  27. Told you. And John, no, the stats are whay they are without including HFA. Why deny facts? You just can't make up claims about how a majority of autistics do this or that, for dramatic effect, without being called on it.

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  28. And, BTW, you don't mind including HFA when it comes to the 1 in 166 stat.

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  29. Mouse; You are obscuring the facts by including Asperger's and HFA with the "train wrecks".

    Then the number of "train wrecks" isn't 1 in 166, genius. Not even close.

    Nobody denies there are more severe cases of autism than others. The reason the numbers have gone up is that cases that would've been undiagnosed or misdiagnosed in the past are given the label today. I used to not be so sure, but I'm pretty sure now that's what's happening.

    Nothing else passes the "smell" test.

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  30. You can play all the games you want with the stat's but, the fact remains that if autism always existed at the same level, people would have been trying to figure out the cause a long time ago. You wouldn't have any trouble finding records on those dead autistics over 75.

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  31. If Fore Sam were more of a gopher and less of a golfer he might realise that the social history of medicine makes it very clear why autism was not categorised before.

    It is only in the last hundred years or so that mental conditions have been categorised as seperate at all.

    If you go back to the beginnings of the 19th century vast numbers of people were institutionalised or abandoned without anyone going into detail as to what label justified this, you were mad bad and dangerous to know and that was all there was to it unless you had good social connections in which case you might be eccentric instead.

    Just as Chemistry did not recognise the number of elements we have listed today simply because it was a developing science, Medicine and Psychiatry was the same.

    How could people in the 19th Century miss the existance of radioactivity before the work of the Curies? Does that mean that all those chemical elements like Radium and Uranium did not exist?

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  32. I'm re-reading "David Copperfield" now, and Aunt Betsy and Mr. Dick would be diagnosed on the spectrum today. I'm currently battling the social workers who think my dad is getting dementia. No, he is now an old, frail man who has had autistic traits all his life. His checkbook still balances to the penny.

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  33. Larry;
    When golf balls were made out of feathers, they didn't go very far but the best golfers still won. The bright people in the 18th century would have recognized children who were "train wrecks". Golfers are skilled at encountering problems they have never seen before and inventing solutions. A few more golfers involved with curing autism would wipe it out quicker.

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  34. George Eliot's (the writer not the hospital) Silas Marner is another literary account of a neurodiverse recluse. Hey he even has absence seizures. A character who did not fit in with his contemporaries who mocked him.

    I think it is very possible that George Eliot came into contact with some of my direct forebears, some of whom were weavers like Silas Marner.

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  35. You wouldn't have any trouble finding records on those dead autistics over 75.

    I'm not sure what you believe that would look like, John. Perhaps you're expecting records that say "Diagnosis: Autism; Diagnosed by: Leo Kanner".

    You don't believe about 1-3% of 75 year olds were classified as either feebleminded or mentally retarded at some point?

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  36. Autistics were in fact noticed in the 19th century by Dr. Down. Dr. Traffert's account is a fascinating read. It also appears that Dr. Down coined the term "idiot savant".

    If history had been a little different, maybe autism would be called Down's syndrome today.

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  37. I have visited a mental health facility in New Brunswick Canada and visited with an adult autistic person who resided there. It is called Centracare and it is located in Saint John New Brunswick. Does that person count in some of the glib comments expressed on this blogsite?

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  38. Autism Reality NB: What are you referring to?

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  39. "Besides the obvious parents who say that repeatedly, Alison Tepper Singer suggested in the Articles of Understanding with GRASP that low functioning means having violent tantrums and being self injurious. That's yet another way to split low vs. high functioning she came up with there (which doesn't necessarily match the other ways people use to split the spectrum)."

    A definition of LFA I actually fit! I haven't seen that before. I'm one of the few autistics who fits fairly cleanly into one functioning category (in my case high functioning) by most definitions, but I have meltdowns and self-injure, so I guess I can go and speak to those people as a 'low functioning autistic'. Guess how quickly they'd either a) deny I have meltdowns and self-injure (tell that to my parents!) or b) redefine low functioning?

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