‘The neurodiverse are everywhere!’

2 Jan

I read an email from the chelating2kids Yahoo Group where ‘the neurodiverse’ are described as being everywhere. Its almost apocalyptic in the way it describes the way this poor mum feels alone in her local area and deluged under the weight of the online neurodiverse websites/blogs etc.

Of course the responses come thick and fast, just ignore them, you’re OK, they’re mad. etc etc. But it struck me that these people really didn’t get it. They’ve bought into the mercury militia definition of ‘the neurodiverse’ as a set of people who want autistic kids to remain undeveloped, uneducated, unhelped and institutionalised. To them, *everyone* who doesn’t follow a strong Biomed path is one of ‘the neurodiverse’. And that’s why they (the evil neurodiverse) seem to be everywhere – its because they are!

We have to get a bit of reality into this situation. Firstly, I appeal to anyone who’s ever used the term ‘the neurodiverse’ to think about what you are referring to. You are referring to an artificially constructed, non-existent entity. There are no such people/thing/entity as ‘the neurodiverse’. There is a concept called ‘neurodiversity’ which some people like the sound of but it is not like a political affiliation or religion or sports club – no member record exists, no fees are collected, no policies are decided upon. Neurodiversity is, at its essence, an opinion that all people, regardless of neurological setup, are of the same amount of worth and due an equal amount of respect.

Does that sound particularly scary to you? Do you not believe that a person who is Down is deserving of equal respect as someone who is NT? Should a person who has learning disabilities have inherently less worth than someone with none?

That’s neurodiversity. At the nucleus of the concept is the idea of equal worth and respect. Why does that fill you with horror?

You should also note that neurodiversity is not something confined to autism and even more importantly, it is not any kind of response to the anti-vaccine based hypothesis of autism causation. ‘The neurodiverse’ are not about you. They are not a response or a reply to you. They do not stand opposite to you. The ideology of equality and respect existed before your hypothesis and will continue to do so after your hypothesis is gone.

In reality, ‘the neurodiverse’ are *anyone* – including you – who have ever stood up for the rights of themselves or the rights of their children/siblings/grandchildren to have the same opportunities as everyone else. Did you fight for your child s educational rights because you thought they deserved the same opportunities as everyone else? Pull up a chair ‘neurodiverse’! When you hear about an autistic child being bullied does your blood boil about the lack of respect shown to that child? That makes you ‘neurodiverse’.

Where the actual set of people who like the idea of neurodiversity differ from you is where the basic idea of respect takes us. When you hear about a child being bullied, I think you feel the answer to that problem is to cure the child s autism. For people who are consciously aware of neurodiversity, they feel the answer to that problem is to alter societal beliefs to make it unacceptable to bully children who are not NT.

Or lets use an example closer to home – biomed. You think ‘the neurodiverse’ don’t want you to treat your kids and don’t want your kids not to be autistic. No. What they want is to reach a place where the unique strengths of autism are recognised and the weaknesses are assisted. When that occurs, it would seem silly to desire a cure. If, in the meantime, your child has genuine medical issues then address them. If, in a hypothetical situation, the alleviation of your child’s medical symptoms somehow results in the disappearance of your childs autism then so be it. Whats the issue here? If a child of mine developed cancer and if someone developed a cure for cancer that had the side effect of eclipsing every mote of my daughters autistic nature, believe me, I wouldn’t think twice.

Often I hear how strong you believe you are being in taking an extreme biomed option. That the use of chelation, Lupron, HBOT etc means you are being strong for your kids, exhausting every option. I don’t see it like that. I think you are essentially good people who have been shocked into a world you know nothing about (autism) and want to get out of that world as quickly as possible. I think you adore your kids and want the best for them. I think you are being taken advantage of by money and ego grubbing quacks.

In the first instance I would like to invite you to stop and look around the world you are now a part of. Don’t deny the bad, but also – don’t shut out or deny the good. On balance, right here and now, is *autism* so bad? Not the gut issues, not the faeces smearing, not the hassles with schools, but your autistic child. Is it all so bad? Is it unremittingly negative? No good points at all? Not even the pleasure of watching your child progress?

Secondly, I think you are badly mistaken in seeing autism and gut issues/smearing/schooling issues/meltdowns as interchangeable. My daughter is low functioning (but how odd it is that I only think of her in that way when I talk with you) and has experienced all the issues you relate. Seriously, all of them. But that was three years ago. Those things are gone or going. My daughters autism is not. She’s not ‘better’ in the sense I think you mean it, she’s not ‘less autistic’, but in exactly the same way as your child, she is not the same as she used to be. She’s growing. There’s no scale for this. It won’t happen uniformly. I don’t want to hold up an NT state of normality as a ‘goal’. She’s already indistinguishable from her peers – her peers are autistic.

Thirdly and most specifically in your case is the mercury/vaccine issue. I realise how much of a relief it can be to have something to blame when you are in a situation you have no knowledge about and are scared of. However, its only by seeking knowledge that fear of the unknown can be addressed. Knowing the unknown in this case means reading the words of autistic people.

The treatments and situations that I sometimes read about are really alarming. I read an email from a young mother who wanted to chelate a 9 month old baby because it was ‘smiling inappropriately’! I read the replies expecting lots of messages of horror and instead read instructions from non-medically trained people on how to do this. No one thought to say – ‘its probably gas, try winding for a bit longer’.

Your mainstream doctor is not part of any plan to control you via vaccines. They say that there is no risk of vaccines causing autism because it is the truth. No one wants to hurt your kids. Why would any doctor or nurse desire to purposefully hurt your kids? The only people who profit out of perpetuating this situation are the people you give money to for expensive tests and even more expensive treatments. Am I saying mainstream doctors know it all? No I am not. In frequent cases its clear mainstream doctors are woefully ignorant about autism and the needs of autistic people. Its never going to get better if you simply walk away.

‘The neurodiverse’ are everywhere indeed, if you define ‘neurodiverse’ as anyone not into biomed. I would hope that respect, equality and education – what I think of as the core attributes of neurodiversity – are also everywhere. I am not trying to make you realise how small the vaccine based hypothesis of causation is – I think in your heart of hearts you already know, but rather that this isn’t a competition. Its not about numbers. Its about reality and the need to fight for the respect and dignity of everyone to be the person they are without feeling like a second class citizen.

33 Responses to “‘The neurodiverse are everywhere!’”

  1. Do'C January 2, 2007 at 14:18 #

    Great post Kev. It’s interesting and has been extremely eye-opening for me over the past year and a half to read from and talk with autistic adults. I doesn’t seem like rocket science to think that if one wants to know how an autistic child will think, feel, and “fit-in” in the future (a big concern for many parents) that attempting to learn the from the views of autistic adults might be a good place to start – autistic children will become autistic adults after all.

    I think you’ve described the basics of the concept ‘neurodiversity’ espoused by the quiet majority quite well.

  2. mumkeepingsane January 2, 2007 at 14:36 #

    Wow, that really hit on what I feel exactly. You could even have been describing my son when you talk about your daughter having had all those issues and progressing over time but still not being “less autistic” only growing out of those specific issues.

    The word neurodiverse had always made me nervous in the past when using it to describe myself but no longer. I think especially the points you made about respect and it not being “you vs. me” were really important.

  3. notmercury January 2, 2007 at 14:54 #

    Great post Kevin! You’ve captured so many thoughts and ideas that have been bouncing around in my head for awhile.

  4. kristina January 2, 2007 at 15:02 #

    Also glad you point out that neurodiversity is not only about autism—and that it’s nothing to be afraid of.

  5. Junior January 2, 2007 at 15:22 #

    I think it’s strange that the “neurodiverse” are seen as some sort of boogiemen and part of the “conspiracy”. Thank you for pointing out that neurodiverse aren’t people, but neurodiversity is about human rights and respect. Great post.

  6. Joseph January 2, 2007 at 15:26 #

    Some in the mercury militia probably do think that the ‘neurodiversity’ concept was invented to oppose them. No, really. But Judy Singer, who claims the term ‘neurodiversity’, apparently first used it in 1998. Sallie Bernard’s paper was published in 2001.

  7. Friend in California January 2, 2007 at 16:45 #

    As always, Kevin, you have a way of putting into words precisely how I feel about a given topic.
    When I intially approached the internet as a way of gathering info on my son’s autism, I was a Tabula Rasa. I gave equal attention to all sources I found, not at that time realizing the various points of view that existed. I realized then, and each new day confirms this early opinion I formed, that from some sources I was receiving a message of hope, and from some sources a message of intense negativity and acrimony. Needless to say, the hope was emanating from what is now known as the Neurodiverse crowd. When I dig into some of Kevin’s (and others’) writings, I found one statement that rand truest of all – that Kevin and his wife’s view had changed once they realized they should be listening to autistic people as their primary source of information on the subject. So I tried to do the same, follwing many of the trails that Kevin had laid (Ballastexistenz, Autism Diva, etc) BAM! Hope was restored, my view shifted, and I, my wife, my two sons, and my son’s grandparents have been experiencing the benefits ever since. I think I would have arrived at this point on my own eventually, but thank goodness for the help I received along the way.
    I think the greatest fear I have experienced as the parent of an autistic boy (now 5 years old) has been – what is his future in the world? What will life look like 10, 20, 30, 40 years from now? What about when we (parents) are gone? Well, having gained exposure to the ND community, I no longer have those fears in the same form they originally took. Now, instead of “Will he ever speak?”, it is “How can I do a better job of communicating effectively with him?” Instead of “Will he be able to form meaningful relationships?”, it is “I feel sorry for the people who will not take the time to appreciate him for who he is”. Instead of “Is it possible for him to be happy?”, it is “What can I do to help him be successful in his chosen profession.” The chasm between these questions is vast, and it took a huge mental shift to bridge that gap. I hope many, many other parents of autistic children are able to take the wisdom of the “Neurodiverse” and benefit from it as I have.

  8. Bartholomew Cubbins January 2, 2007 at 16:59 #

    It’s hard to hate someone for their belief in acceptance and inclusion. It’s much easier to reduce them to a derogatory name and use it with spite.

  9. New autism mom January 3, 2007 at 01:04 #

    I don’t trust doctors that have an agenda. That’s why I’m not taking my boy to a DAN practitioner. Plus I believe that the kids that make the most progress are responding to their behavioral and speech therapies rather than supplements and diet. Or like you said, the kids are just growing older, learning new skills and leaving some of their old habits behind. However I don’t like to openly disagree with other autism parents in my community for fear of being shunned… They’re all curebies of the first degree… The kids must take like 15 different supplements a day, enzymes, etc, I wonder if that’s doing more harm than good.

  10. Mike January 3, 2007 at 01:45 #

    Kevin, this was an exceptional article. I found myself loudly saying “yes” at least a half dozen times. Keep up the good work and clear thinking.

  11. livsparents January 3, 2007 at 03:27 #

    “The biomedically neurodiverse are everywhere else”

    I read everywhere of the ‘biomed crowd’ the ‘curebies’, those idiots who spend all that time to erradicate autism from the face of the earth. That they’d rather not deal with the stims, the little bit of extra work involved. They’d rather destroy everything that makes them who their kids are. That they are fat, lazy and more worried about their standing at the social club than with their child’s development.

    Well the fact of the matter is that we are you and you are us. WE ARE ALL the neurodiverse since we ALL deal with the same issue…autism. We deal with the same discriminations, education issues, the same general frustrations with the medical community with regards to their lack of knowledge of autism. We deal with the same behivio(u)ral issues, same general stims, comorbids, night wakings, language issues.

    Isn’t the only difference between the two groups really whether it was externally acquired vs internally developed. How many of the ND or curebies can REALLY tell me where autism came from? Comeon, raise your hands. Hey you mercury folk put down you hands, no evidence. All those in favor of genetics raise your hands? PUTem down, not enough evidence! MMR, in eutero, genetic enhancement, TV, environmental toxins, whatever…put’emall down!
    I understand the ‘ND’ frustration with all those frantically waving hands, but you must understand that with NO ONE waving their hand actually TELLING us what it is and where it comes from, what else are people going to do but speculate?

    With this frustration and speculation comes the awful spector of hope; that because we do not know what causes it, we do not know what might ‘cure’ it. Can you blame them?
    Personally, I have taken another step. To not necessarily think they can be cured, but maybe their symptoms can be treated. No, not their stims, their focus on detail or other ‘quirky’ behaviour, but their physical symptoms which may cause the autistic to suffer needlessly.
    I read this today and thought, if this kid had some physical ailment that was causing him to lash out,if we could help him to calm down, sleep more, maybe he would have been able to stay with his family.
    http://www.timesdispatch.com/servlet/Satellite?pagename=RTD%2FMGArticle%2FRTD_BasicArticle&c=MGArticle&cid=1149192440965&path=!flair&s=1045855936229

    Bill

  12. mcewen January 3, 2007 at 03:59 #

    Hmm, and there was me thinking how frightfully clever I was to be able to use a word like ‘neurodiverse’ ; far too many syllables and sounds like so much psychobabble.

    I used to use it an interchangeable alternative to ‘spectrum’ as in range. I’ll be more careful now to ensure that the spectrum’s elastic is stretchy enough to include everyone.
    Cheers dears

  13. Friend in California January 3, 2007 at 05:15 #

    “Isn’t the only difference between the two groups really whether it was externally acquired vs internally developed.” – Livsparents

    Well, no. The differences run much deeper than that.
    And your next statement helps to illustrate that point –
    “How many of the ND or curebies can REALLY tell me where autism came from? Comeon, raise your hands.”
    Bottom line is, no one can tell you the cause of autism, but only one side is trying. The other side (if we have to call them “sides”) is telling you what the science indicates not to be causal factors, and taking the extra step of attempting to expose you to the thoughts, activities, and accomplishments of autistic adults.
    You, by your statements, seem to have made a distinction between physical ailments in autistic people that require medical attention/solutions as opposed to the existence of autism as a group of behaviors indicating a neurological divergence from the typical person.
    This is not the case with all “curebies”. There are some who would throw caution to the wind in selecting biomedical treatments for their children based on the concept that potentially harmful side effects are the “lesser of two evils”.

  14. Ms. Clark January 3, 2007 at 07:37 #

    “Isn’t the only difference between the two groups really whether it was externally acquired vs internally developed.”

    Amanda knows a woman who has externally acquired autism (prenatal rubella infection) who is pleased to be autistic. Go figure, huh?

    I know some autistic adults who can with some certainty say that they are autistic because of a named genetic syndrome. I know some parents who can say the same thing about their kids. As far as your “raise your hand” scenario, no one can say they know what causes all autism, but quite a few people know their child has “agenesis of the corpus collosum” or something similar.

    They might still be “curebies” if they are so intent on making their child as normal as possible that they don’t care if they do, or can’t see that they are, hurting the child seriously, emotionally and or physically.

    One thing that the “curebies” and the “biomeds” and “mercury militia” and whoever can be sure of, was emphasized in a recent video by Christschool that I put on my blog, it was the one with the talking chimps. Christschool had the chimp say for him, “There is a community that accepts your child waiting for you.” or words to that effect. Which no doubt would sound creepy to the likes of Lenny Schafer, who has gone out of his way to demonize autistic adults and the “neurodiverse.” Him, along with 2 or 3 “curebie” oriented blogs. But that doesn’t change the fact that if Lenny upped and died tomorrow (God forbid, because I’ll be blamed for sure….), if there was no one else to speak up for the basic needs of his son, the evil ND would, if there was no one else to be his friend on earth, one of the ND would.

    Think about it.

  15. Ms. Clark January 3, 2007 at 07:55 #

    Kev,

    I forgot to add that I also think this was a great essay. I also have seen discussions of what parents would do to a tiny baby they suspected was “mercury poisoned.” It’s frightening. Their tests for mercury are so often like the tests for witches… hold a suspect witch under water for 10 minutes, if she drowns… you were right, she WAS a witch. In this case they aren’t holding their babies under water, thank goodness, but they are using mail-order labs that consistently give heinously inaccurate lab results. You can almost bet that every person who sends urine into one of these labs is going to come out with some scary level of something, and frequently the cure is scary.

    I’ve seen the parents talk about supplementing lithium based on low lithium levels from a DDI urine test! Hello! Lithium pills for a preschooler!!

    But there I go being an evil ND again…. can’t help it… was born that way, I guess.

  16. Julia January 3, 2007 at 14:48 #

    Bill,

    I have no idea what caused your child’s autism. But in my family, there’s no doubt in my mind that all our autism has some basis in genetics. I’m not saying this is the case for EVERYONE, but in the particular instance of my immediate family, it is.

    I don’t know just what genes, but there are a lot of traits more commonly associated with autism than not running around in most of the ancestral families (ironically, the one grandparent without autistic traits in the family suffered from epilepsy for 30 years — unless you consider epilepsy to correlate with autism, in which case all my kids’ grandparents were running around with a few “autistic” traits each).

  17. elmindreda January 4, 2007 at 06:36 #

    Brilliant.

  18. keith January 5, 2007 at 10:06 #

    ALL generalizations are false. As a new parent to a child with “autism,” “PDD-NOS,” “Neurodiverseness,” take your pick, I find this area really fascinating. I am also a family physician with no previous experience in this domain. It seems to me that there is as much diversity within this diagnosed group as there is in the general population. Because of this I feel it is often difficult for people to have meaningful discourse about the topic due to individual context.

    DSM -IV is essentially a document put together by experienced clinicians trying to objectively define “disorders” so that people can compare apples to apples for the purpose of research. There is minimal “evidence” behind much of it. I worry sometimes that the convenience of a checklist/cookbook layout makes it easy to interpret as gospel. By definition any diagnosis in there has the criteria of, “Must cause dysfunction in at least one sphere of life and is not better explained by another medical condition.”
    Diagnoses in DSM have hugely fluctuating natural histories and are more or less amenable to treatment at this time. For example, borderline personality disorder is notoriously difficult to treat. I would suggest that the etiology of this is as ambiguous as autism.

    It strikes me as inevitable that there will be such varied opinion on what approach to take towards “autism” when the term will mean something different to everyone based on their experience. How do you blame a parent or clinician for getting fired up about various diets or supplements or medications if they saw a non-verbal, tantrumming, self-abusive child calm down and speak in the near term after treatment with whatever they tried (not to say this actually was the cause of improvement). Similarly, if your only experience with autism is having an adult acquantance or friend who is quirky and has impressive numeric recall then why would you think autism needs any treatment at all.

    I doubt there are any people who at the outset of the diagnosis are not in store for a grieving process. Denial, anger, acceptance,… The concept of acknowledging neurodiversity and embracing it is clearly noble. How can anyone argue against accepting everyone as being of equal value? (psychopaths are a challenge though aren’t they?)I do not see how this conflicts with wanting a child to be safe and able to communicate as best she can with others. Just as there are crooked mechanics and stock brokers there are certainly egocentric, narcississtic doctors ( I know several – hopefully am not myself, couldn’t be I am too fantastic). I am thrilled to see that the NIH is doing some well desiged studies to look at some of the more dangerous therapies such as chelation to see what benefit it might provide and to document risks as well. This way parents can hopefully make more informed choices about what might be worth trying to improve function. Chastising parents for trying interventions that have perhaps anecdotally shown some benefit seems mean spirited. Any clinician claiming a specific treatment is certain to bring about improvement or recovery and has no side effcts or cost associated is certainly worth chastising.

    I do not think there will ever be a cure for anorexia nor will there be a cure for autism spectrum disorders. I still think it is worthwhile to continue exploring what lies at the core of both of these issues and anything that can enrich the lives of people affected be either should be welcomed.

    Again, all generalizations are false.

  19. Jonathan Semetko January 6, 2007 at 03:56 #

    Thank you for offering clarity and depth to this Kev.

    This is one of your best pieces and that is saying something.

  20. Kev January 6, 2007 at 17:13 #

    Keith – thanks very much for a truly interesting comment. Has one of your kids just been diagnosed?

    Jon: Ta ;o)

  21. Anne January 7, 2007 at 05:42 #

    Hi, Keith, welcome to the world of being an autism parent. I have a 20 year old son on the spectrum.

    Is “all generalizations are false” a generalization? (Hah! Just messing with you.)

    Anne

  22. Keith January 8, 2007 at 00:34 #

    1. Anne, yes it is a generalization, beware! (intentional)
    Would love to hear about your son.. now 20? I suspect you lived through a different time when he was first diagnosed. Was it all gloom and doom then?
    2. Kevin, my son was diagnosed 1 year ago now. He was developping “normally” but in the summer of 2005 he had a rather flagrant stim, fist clenching with some grunting. This seemed to happen when he was cold. Very striking and led us to developmental peds, peds neurology, and psychologist who all felt that his socialization and speech were normal (as did we) and they reassured us that he really did not “qualify” for being on the spectrum. Benign stereotypy was the official diagnosis.
    He came down with chicken pox Dec 15th 2005 and then lost all speech by Dec 22nd and developped multiple stims and lost any eye contact other than to seek food or drink. He had been speaking over 100 words in both english and french at the time. So, boo hoo. Since have been wading through the various ideas of all the “schools.” Very interesting if it wasn’t so close to home. It certainly is an area at high risk for false hopes and quacks much like cancer is (shark cartilage? sure why not).
    I am a math guy and did some actuarial work before entering medicine and value data. When your child is in the mix it becomes hard to remain objective.
    So far, this past year Kieran (3.5 yrs now) has improved with respect to some eye contact and has imprved comprehension but continues to vocalize some words while inhaling although if very motivated by say cookies could say “cookie” or “watermelon” as clear as my grade 5 english teacher. Motivation seems to be the problem.
    Trying to be positive it certainly has helped me be a truly unbiased and empathetic person /doctor. I always thougth I was before but now certainly feel more genuine and comfortable around so called “disabled” people (Down’s, CP, schizophrenia).

    Anyway, I could blabber on all night but will end there. At this point I continue to seek explanations and possble interventions that may make our family life easier. I almost see it as part of the grieving process to contemplate some of the “out there” proposed therapies as the new reality sets in. Did you never contemplate some sort of “treatment” soon after Megan’s diagnosis? Is your sense that the biomedical movement is more popular in North AMerica than the UK? I am in Ottawa, Canada.
    Very impressive site by the way in terms of organization and content.

  23. Another Voice January 8, 2007 at 05:28 #

    Keith – I wish you luck and success with your son.

    I can recall first starting to use the internet in an effort to find out about autism. Let’s just say it was a wild ride. Since I know how you treat generalizations, allow me to throw a few around. My observations.

    Just as the children are on a spectrum; so are the parents. The parents also seem to be well educated, perhaps in possession of college degrees would be a better description. They generally write well, have strong opinions and are conversant with computers and the WEB.

    I have never been able to find out what autism really is. Because the exact definition is medically unknown and the causes are hotly debated, it has become prime country for “quacks”. I have never seen anything like it. We don’t know what it is or what causes it, but there are bus loads of folks willing to sell its cure. There is a lot of money to be made in autism and some of these “experts” are working it for all they can.

    There are clearly “camps” among the parents. I used to think the big line was drawn between biomed and neurodiverse. That may have been too simplistic. I really see a big gap between those that feel “mercury poisoning is autism” and everybody else. I see the question “are you using chemical agents to eliminate mercury from the child’s system?” to be the dividing line. You will easily tell when two people from each side of that line begin an exchange. It isn’t pretty. I try to figure out how sincere arguments are; there is a fine line between “I must do everything possible” and “I have nothing to loose” so I will run any risk with my child.

    You must have thick skin, I have seen people refer to little children as “train wrecks”, “shells that used to house a person” and “better off dead”. It is pretty sick, but the dialogue is intended to shock and invoke sympathy. You will not see those words come out of Kevin or the people that make up the “Hub”.

    You will encounter a huge number of wonderful people. I am very grateful that I stumbled upon Kevin’s site and the list of sites he has listed going down the right side of his page. Autism is a tough thing to deal with for parents, takes a lot of work and care. But it does seem to make a lot of parents better and more considerate people.

    One last thing, some of the people that post here are autistic. Their willingness to share offers everyone the opportunity to gain a very valuable insight.

    Best wishes.

  24. caseofthevapours January 8, 2007 at 07:33 #

    Hi, Keith:

    I have a question that I hope is neither too clinical nor too personal: When your son had his bout with the chicken pox, did you treat with antivirals (eg. acyclovir; famciclovir;
    valacyclovir) ? I had a very bad bout with chicken pox myself (many decades ago of course), resulting in long-lasting effects.

    You’ve found a great blog here and I, too, wish you success and good luck with your son. Again, I hope my question is not out-of-line.

    Regards.

    PS Oh, and btw, if it hadn’t been the chicken pox _in my case_, I think that “whatever” woulda been set-off anyway at some point anyway.

  25. Friend in California January 8, 2007 at 17:55 #

    Another Voice –
    Great comments. My sentiments exactly.

    Keith –
    You sound like a really decent guy who is trying to make the best decisions for his child. Keep up the good work, you have my support as another parent of a child with autism.
    One note based on your comment about his language. With our son we notice a huge gap in verbal skills based on the prompt he is responding to. But in our son;s case, it is not motivation, but whether visual cues are present. At the age of 5, he is a magnificent reader and counts to 100 (and backwards down to zero) without any problem at all, but is as yet unable to answer the question “How was your day at school today” with anything other than a response that he has learned is appropriate to this question (“fine”). He does not seem to understand the content of the question, just the string of words by memory. He is verbal, but non-conversational. His vocabulary dramatically outpaces his ability to construct, or understand, sentences – far more than a neurotypical child would. So, it has been somewhat of an epiphany in effective communication for us to realize that visual cues make a huge difference in his ability to understand us. Maybe you could try this with your son and see if it holds true with him as well? For my son, it is literally as simple as writing the question down on paper and letting him read it himself. Then he understands (in most cases) and responds appropriately.

  26. Keith January 9, 2007 at 05:05 #

    Another Voice
    – thanks for the warmth, appreciate the insight. I have come to adopt the term “autisms” in that there is so much variability that to me it is plausible that there really are different etiologies in different people. This notion of a “regressive form” vs primary seems like a significant distinction in terms of etiology. I guess I still see a spectrum of Mercury/chelators also. From those who feel Autism is mercury poisoning to those who again see “metal toxicity” as another general issue and one worth pursuing to help with function.
    Certainly agree though that there are people carvng out careers and everyone has to find their niche to stand out.

    Caseofthe-
    Thanks for your response. Not too personal at all. Actually, I will dump out most of our story here as much as therapy for myself as to share with you / the group. Pardon me if this is longwinded and or inapproriate.
    Speaking of personal, do you find you have a preferred learning style? Visual? Auditory? Hands on touch?
    Did you ever try antiviral therapy after your CP be it immediately or long after? I know there are biomed people claiming this can be beneficial.

    My mother is a type I diabetic since 1 year after my birth. Otherwise my wife and Ihave no significant past family medical histories. We have a wonderful 5.5 yr daughter who is adorable and a bit precocious in most domains. She is a godsend with her brother Kieran. My wife’s first pregnancy went well and our daughter has never really been ill except for colds and scrapes.
    Late in the first trimester of our pregnancy with Kieran my wife had a back molar (filled with evil amalgam) explode while eating something no doubt overcooked by myself. She actually spit out chunks of the stuff and made a decorative design around her plate. She also had severe pain so had it repaired with porcelin later the same week. For the next 3 weeks she developed the worst case of hives I have seen in someone not reacting to a food allergy or bee stings. Thought nothing of it. Rest of pregnancy well. Baby well. Never sick, no antibiotics, rare cold for first 2 yrs of life. All vaccines as per schedule with no reaction, in Canada Mercury not an issue as no vaccines have thimersol except Flushots and Mum didn’t get RhoGam. Hep B is given in grade 7 to all school kids.
    The one oversight was that we forgot to give him his CP vaccine as it was still relatively new here and we missed it at his 1yr check-up which is when we give it here. So he gets bad CP and no we didn’t treat him with any antiviral at the time as acute CP isn’t treated except with supportive care in immunocompetent kids here. Then of course the sudden change in him sent us into shock and on we go.

    I do not remain convinced that mercury, CP, or vaccines caused his autism. I do subscribe to the idea that there are likely some kids and probably Kieran is one who are predisposed/vulnerable to some sort of immunologic insult that
    can trigger exprssion of symptoms we call autism. Sort of like Multiple Sclerosis. I, like you (Caseofthevapours) believe that it was likley his destiny to manifest autism symptoms and had it not ben CP then the next cold or vaccine would have triggered it. This is why I tend to believe parents who swear that immediately after one vaccine or another their children changed dramatically. I think the mercury idea is a red herring.

    Friend in California –
    Thanks so much for your thoughts. I had never thought of it that way exactly. Clarity and volume remain huge issues for him. Unless he is screaming “No” he whispers everything else and still rarely says 2 syllables. He does readily identify characters and objects from picture books but again only with 1 syllable mostly. Did you subscribe to a particular “therapy” style before school? ABA, RDI, etc? We struggle with how to approach this. Presently we have a wonderful woman who technically does vrbal ABA I guess but I question whether or not it is simply her attention and stick-to-itness that is the best feature of her time with him. Again, is it time, therapy, he improves some I guess but it seems ever s slow and fluctuation day to day is great. Thankfully he sleeps well and eats whatever we give him.
    Again, thanks for the visual idea.

    I remain starving to hear of natural histories of any adults with autism and what their thoughts are about this. After a year of this reality sinking in you do develop thick skn. Even people who mean well (I hope) say things that are so insensitive it makes me cringe and my wife weep. As Another Voice was saying the terms like “train wreck, ” “hell on wheels,” are just awaful. We received Xmas cards from relatives who are good people saying thigs like hope your “autistic son” is doing well as though he no longer had a name. Fortunately some people surprise us the other way. “Your son is so beautiful and you must be learning so much about autism with him,” an insightful acquantaince remarked. Indeed.

  27. Friend in California January 9, 2007 at 06:26 #

    Keith –
    Immediately after our son’s Dx, we jumped into behavioral therapy with him. It is called ABA, but it is a far cry from what Lovaas developed.
    The program our son is on is oriented towards skill acquisition and coping techniques (for him, not us :)) And the program utilizes many different components from many “named” therapies.
    Example: Washing Hands.
    First we put a string of pictures behind the faucet that showed the steps of hand-washing. There were 7 steps: turn water on, wet hands, soap hands, rub hands together, rinse hands under water, dry hands, turn off water. The therapist (I dislike that term, but it works here) oversees Jason proceeding through these steps. If he has trouble getting started, or even interested in starting, she would prompt him and use “hand-over-hand” nudges to get him moving on the task. At each interval, she would point to the next picture, verbalize what it says, demonstrate if necessary, then prompt him through the process. I would estimate it took about 20-30 repititions for Jason to master the skill. The key is, with successful progress, she (and we)would give him lots of love and encouragement. This techinique was used for things like turn-taking, toothbrushing, not laying on the floor in stores, not bolting into parking lots, eating with utensils, potty training, etc. Jason clearly enjoyed the process, and has gained many skills as a result. Some things we still have not helped him to achieve (combing hair, washing himself in the tub, getting dressed solo, etc.) But progress is perpetual and significant for him. And he is proud of his abilities when he gains them.
    Did we inadvertently create a situation where Jason is overly dependent on picture/visual cues? Probably not, but even if so he is a really smart guy and will overcome that artificial dependence when the time comes to deal with that.
    The other benefit to having a good behavioral therapist is that parenting is exhausting (for ALL kids) and it is nice to have someone step in, under your direct supervision, and maintain enthusiasm and intensity with a child. Let’s face it, we are human and have only so much capacity for “direct” parenting.
    Also, one of the most important things to recognize about therapy is when to back off. My son needs his time to do the things that make him happy and comfortable. We don’t prevent my NT son from free choice activities, so why would we prevent our other son from the same? If he wants to spend 2 or 3 hours lining up his Thomas trains and then viewing them from many different angles, so be it. Instead of preventing that, I wait for a moment when he seems really relaxed and focused on his hobby and then sit down and start asking him about his trains. What color is Percy? Why are the steamies over here and the diesels over there? Is Bulstrode a boat? Why is Diesel 10 angry? Stuff like that. I take a step into his area of interest, and the results are touching, surprising, and fun for both of us.
    I hope that helps.

  28. Kev January 9, 2007 at 10:37 #

    Hi again Keith :o)

    “So far, this past year Kieran (3.5 yrs now) has improved with respect to some eye contact and has imprved comprehension but continues to vocalize some words while inhaling although if very motivated by say cookies could say “cookie” or “watermelon” as clear as my grade 5 english teacher. Motivation seems to be the problem.”

    Yep, it was for us when Meg was that age and still is to a certain extent. Our issue is that we were _under_estimating her. Truth was that having her IQ assessed by stacking bricks was not a comment on her intelligence but rather her boredom threshold! Meg has a wide variety of things she likes so we alternate them unless they are particularly educational (like being on the PC) in which case we give her free reign (within reason).

    “I almost see it as part of the grieving process to contemplate some of the “out there” proposed therapies as the new reality sets in. Did you never contemplate some sort of “treatment” soon after Megan’s diagnosis? Is your sense that the biomedical movement is more popular in North AMerica than the UK? I am in Ottawa, Canada.”

    I see what you mean and yes, we did. If you read the earlier entries of my blog (getting on for 4 years ago now!) you’ll see I was a big fan of the vaccine hypothesis. What changed for me was reading the words of the writers of Autistics.org and at the same time reading the science.

    I think the Biomed movement has followers all over the world (India for example has a few Biomedders amongst the upper class Indian population) but its more obvious in the US as the right to practice more woo-based medicine seems easier and of course, Americans are used to paying for medicine whereas we get most of it on the NHS.

  29. Ms. Clark January 9, 2007 at 18:34 #

    Keith,

    Have you seen, “Autism is a World”? It’s a documentary about Sue Rubin’s life. She doesnt’ represent the whole of autistic experience, but that’s a start if you want a “natural history” of one adult’s life. It’s not a breakdown of her childhood step-by-step, but they do talk about her childhood when everyone thought she was retarded.

    She has a genetic disorder, just so you’ll know. One grandmother on “autismweb” was freaked out by Sue’s appearance (Sue is not that strange looking, she’s short) and couldn’t watch it. I thought it was a pretty weird reaction on the grandmother’s part, actually, but I wanted to warn you, just in case.

    There are books by autistics of all sorts, some talk about their childhoods.

  30. sharon January 9, 2007 at 22:02 #

    This is a fabulous post Kevin. If only it could be disseminated more widely! And I know that you have a very popular blog, but stuff like this should be in the national newspapers. Not that I’m biased or anything.

    Keith, welcome to the autism world.
    I have a 6 yo autistic son. The key to helping him has definitely been to follow his interests. He learnt numbers, colours, letters and facial expressions through talking with him about Thomas the Tank Engine!
    My own blog is mostly about him and his learning.

  31. Tefkat January 19, 2007 at 02:39 #

    Thank you for your clarification of the issue Kevin. Ifound it a great help.

    May I suggest caution to the people who dismiss physical causes out of hand though?
    25 years ago I was called a crank for thinking I could help my son by cutting certain additives out of his diet, but it DID work up to a point (despite the efforts at sabotage by the sort of people who think you’re evil if you deprive the poor little darlings!)
    12 years ago, when number 5 appeared to be a clone of number 2 we tried all the same exclusions, again with SOME success. Then we accidentally spent a week in a remote location, without taking sufficient supplies of a couple of staples. Three days after the supply ran out a child who had spent over 2 years only sleeping for 2 hours out of every 24 actually slept for 12 hours (I kept checking his breathing). He stopped screaming and bouncing off the walls. On the way home I didn’t have to use 2 sets of reins to tie him to myself and the ferry railings. (The effects really were that dramatic!)
    On several subsequent occasions we watched him turn into a demon within 20 minutes of ingesting something he shouldn’t have (I finally understood why my mother tried to have me exorcised 40 years ago!).
    At this point I’m prepared to accept that maybe there is an explanation for our teenagers’ progress other than our additions to and subtractions from their diets, but I’m certainly not going to abandon those strategies, just in case.

    Regarding the questions question, I have a 14 year old who took his English language “GCSE” (normally taken at 16) last year, and is currently, after 6 weeks’ study, more than half way through the first year’s “A” level course (Had to laugh today – he was the only one in the class who understood what “prosody” meant) and he still can’t manage that “How was your day?” type of question. I think it’s probably too hard to try to analyse a whole day (much of which went straight over your head anyway) and condense it into a short answer that would make sense, especially when stress is such a sure way of making one forget even the simplest words. (Other people’s expectations, especially those of people you want to please, can be a great weight sometimes).

    Keith,
    I agree wholeheartedly that generalisation is a bad thing, but speaking from personal experience I think “Another Voice”‘s suggestion about visual cues makes a great deal of sense. I was lucky enough to be shuffled off into the library and then forgotten for almost the entirety of every school day until the age of 11 and consequently arrived at secondary school years ahead in some subjects. then I discovered I didn’t understand a word the teachers said (Well, the individual words, yes, but not what the sentences meant :-/ ). I survived by reading the textbooks.

    (I also find it’s harder to process what is being said if there is any background noise. Extraneous speech is the worst but any sort of noise will do it – even the fridge compressor. it may be worth listening to the room in which you ask the questions, bearing in mind that something that’s almost below your level of perception may sound as loud as a train to your son.)

    Sorry, that was a bit long – and probably sort of preachy too, nyet? Please don’t be offended. It’s kind of not wanting anyone else to have to go through what you went through – if you see what i mean?

    Ria

    By the way, could someone possibly tell me what’s wrong with lining things up please? We didn’t realise it wasn’t “normal” so we just went out to charity shops and jumble sales and bought as many as we could find of whatever it was each child was obsessed with. You have to be careful where you put your feet when you have lines extending from one end of the house to the other but apart from that what’s the problem? Does it harm them in some way?

Trackbacks/Pingbacks

  1. Autism Vox » David Kirby on “there is no autism epidemic” and Autism Vox on his rhetoric - January 3, 2007

    […] Kirby defines this “movement” as composed of adults with autism and primarily with Asperger’s syndrome who “argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior.” Further, Kirby states, the members of this “movement” of the “neurodiverse” (on which neologism see Left Brain/Right Brain) have high-functioning autism; those with Asperger’s have “very high functioning autism.” […]

  2. Left Brain/Right Brain » David kirby plays the segregation game - January 3, 2007

    […] He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children. […]

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