New: Autism Parents Forum

25 Mar

I’m launching a new project today primarily for parents of autistic children (of any age) which I’ve called Autism Parents.

I wanted to set up a forum where parents of autistic people who weren’t necessarily interested in the idea of cure could get together and swap hints/tips on parenting in an easier format than a blog could allow.

Its got boards for education, medical, officialdom where you can ask questions or answer questions from other parents just like you and me as well as boards for discussing books/movies/TV programmes and news stories etc related to autism.

Please go and signup, get posting and please – spread the word!

34 Responses to “New: Autism Parents Forum”

  1. Harold L Doherty March 25, 2007 at 12:51 #

    Why have medical discussion boards for parents who do not seek a cure for their childrens’ autism?

  2. Another Voice March 25, 2007 at 13:09 #

    I think this is a great idea, sharing is a big part of improvement. There is also mutual support that can be helpful during difficult times.

    This type of a forum will not be suitable for all, and perhaps they should not join.

  3. Luai_lashire March 25, 2007 at 13:11 #

    Harold:
    Because a lot of autistic children have medical issues like asthma, allergies, IB, epilepsy, ect. For that matter, so do NT children.

    Kevin:
    I’ve always thought that one of the most important things for parents of autistics (particularly NT parents of autistics) was getting the perspective of autistic children. So what I was wondering was, could you make a board for children to present what their parents do that helps them, and what they wish their parents did for them?

  4. Kev March 25, 2007 at 13:14 #

    Harold – I really did it to give the pedantic something to moan about ;o)

    Luai_lashire:

    An excellent idea. I’ll need to think it through as hosting forums for children is a tricky business. Could you mail me and maybe we can work it out together?

  5. mcewen March 25, 2007 at 16:08 #

    I have a moan! How come everyone is a newbie except you? Nepotism!
    Cheers dears

  6. Harold L Doherty March 25, 2007 at 23:18 #

    Sorry I missed it the first time. Now I get it. Treat or cure everything EXCEPT the autism disorder.
    I’ll get the hang of this denial stuff some day.

  7. Laura March 25, 2007 at 23:22 #

    I’m excited to check it out! 🙂

  8. Prometheus March 26, 2007 at 00:11 #

    Hoarold seems to know of an effective cure for autism. Great!

    Does he have any data that show that his treatment is effective? (no anecdotes, please, just data).

    For years, I’ve been asking the people who have found a “cure” for autism to show us the data. Many people have claimed they have “the cure”, but none have yet shown us the data.

    Maybe Harold has data.

    I’m all ears, Harold. I’m ready, willing and able to be convinced. Lay the data on me and show me the way.

    Of course, if you’re like all the others, all you have is a bunch of stories. Parents who have had enough stories need a place where they can discuss how to raise their children without being bombarded by “cure” stories and being told that they need to [fill in the “autism cure”] or they’re bad parents.

    Harold, it doesn’t sound like something yo’d be interested in – why not give it a miss?

    Prometheus.

  9. Friend in California March 26, 2007 at 03:30 #

    Once again, Kev, you have gone above and beyond the call of duty to enhance the ability of all folks in the autism community to congregate and engage online. My hat’s off to you.

  10. Kev March 26, 2007 at 05:09 #

    _”Sorry I missed it the first time. Now I get it. Treat or cure everything EXCEPT the autism disorder.
    I’ll get the hang of this denial stuff some day.”_

    There you go Harold – you’re getting the hang of that pedantic moaning perfectly!

  11. livsparents March 26, 2007 at 17:53 #

    To give Harold the sets and subsets:

    Acceptance is also a subset of help.
    Cure is not the exclusive set of help.
    Autism is not exclusivly a subset of disease.
    Recovery does not always equal cure.
    Recovery does not always equal Neurotypical.
    Happiness and autism CAN exist in the same set.
    Acceptance and love ARE in the same set.

    Interesting board so far Kev, I hope to bring some healthy skepticism within the skeptics; although I may feel like a born again Christian at an athiest convention!

    Bill

  12. anonimouse March 26, 2007 at 19:33 #

    Harold,

    Considering your attempts to silence dissent on your website (where ARE the two posts I made, huh?) I’ll try to summarize my position:

    Until such time that one can conclusively illustrate that the medical issues some folks associate with autism are REALLY part of autism (and not unrelated conditions which SHOULD be treated)…

    …and that there is a way to alleviate such medical issues through the use of biomedical treatments…

    …and that the “negative” behaviors often associated with autism can be cured with countless hours of ABA…

    …and that there is any reasonable belief that autism is a condition that can be cured…

    …I suggest we focus our time and resources not only calling autistic children (and adults) “sick” or “poisoned” or “damaged”, but doing what we can to help autistic children (and adults) achieve their maximum potential. We won’t be doing that by perservating on alleged cures that have little or no chance of working, or by trying to ABA the quirks of autistic children out of them.

    That doesn’t mean that children with self-injurious behaviors should be allowed to continue said behaviors without intervention, or children with serious medical issues should have said issues chalked up to “the autism”. I defy you to show me one post where a supporter of neurodiversity makes that claim.

    The bottom line is that you want to create a false dichotomy – “cure” or “leave alone”. Isn’t the answer a whole lot closer to the middle?

  13. livsparents March 26, 2007 at 20:11 #

    Can I hear an AMEN?

    Except for that middle thing…

    “…and that there is a way to alleviate such medical issues through the use of biomedical treatments…”

    Although biomedical treatments is a BROAD term that could mean almost anything in my view…Can you spell GF/CF?

    I’m gonna have fun on the board in any event…

  14. Michael J. Dochniak March 26, 2007 at 23:37 #

    I’m a parent with two autistic boy’s and think it’s ok to cure and not cure autism. In my opinion, let’s cure those on the autism spectrum who have atypical immunology making them very sick and let’s celebrate those on the autism spectrum who are healthy and happy. Thus, everyone’s point is valid and acceptable.

    Comment:

    If neuro-cognitive development in ASD is primarily affected by immunology, then our great grandchildren will be debating the cure or not cure question.

  15. Lucas McCarty March 27, 2007 at 10:51 #

    Unfortunately, not every point of view is equally valid. That’s why there are such things as ethical standards.

    Many types of Deafness can be ‘cured’ or treated in a manner to improve hearing, but Deaf culture as well as the wider Disability Rights movement opposes them on ethical grounds: when you provide the means for a certain distinct group of people to eliminate themselves by removing their distinction, you are taking a moral stance that such a distinction is wrong. The world would not tolerate the Deaf if most Deaf people could be made non-Deaf, they’d ask “Why do we spend so much resources on you when you can be ‘fixed’?”

    The same is now occuring among Down’s people; now a pre-natal test allows a Downs feotus to be dectected and aborted, most detected are aborted and Downs advocacy groups(which are far superior to Autism advocates like Mr Doherty in every way) are doing everything they can to let the world know they condemn it as barbaric.

    Unless you can garauntee(which you can’t, history teaches) the utter freedom from coercion, seeking to eradicate Autism is implicitly unethical.

  16. clone3g March 27, 2007 at 12:11 #

    In my opinion, let’s cure those on the autism spectrum who have atypical immunology making them very sick and let’s celebrate those on the autism spectrum who are healthy and happy.

    You mean those who have latex induced autism? How many would that be, in your opinion?

  17. Michael J. Dochniak March 27, 2007 at 18:20 #

    clone3g wrote:

    You mean those who have latex induced autism? How many would that be, in your opinion?

    Comment: It’s called allergy induced autism and yes Hev-b protein exposure from NRL continues to increase atopy globally. I’ll answer your question though……I don’t know?

  18. clone3g March 27, 2007 at 21:20 #

    My bad. ‘Allergy Induced Autism.’

    Other than the hypothetical trigger, how does your hypothesis differ from thimerosal, aluminum, antibiotic, or television,etc. hypotheses?

  19. Michael J. Dochniak March 28, 2007 at 13:25 #

    clone3g wrote:

    Other than the hypothetical trigger, how does your hypothesis differ from thimerosal, aluminum, antibiotic, or television,etc. hypotheses.

    Comment: Briefly, the Hev-b proteins are antigenic proteins wherein thimerosal, aluminum, TV etc. are not in that category. If your referring to a more general classification of environmental insult, then yes they all could be described as environmental insult hypotheses.

    A question for clone3g:

    Q. How do you think it differs?

  20. Barbara Fischkin March 28, 2007 at 14:34 #

    As the mother of a 19-year-old son who has autism and does not speak, I have been looking at cures on and off for about 15 years since he was diagnosed with Childhood Disintegrative Disorder. (major regression after speaking several languages). He’s not cured. He may never be and that is ok. I know, though, – from things he has painstakingly typed out for me — that he would like to talk. My rules of thumb on cures: If I am sure it will not hurt him I give it a try. If I am sure it will not take great pleasure out of his life I give it a try. I have not put him on any kind of a diet because he is a strong, fit young man who loves many different kinds of foods. (his beloved uncle is a chef and his father and grandfather are great cooks). Secretin scared me and there weren’t any good numbers so I didn’t do it. He’s had aba and seems to need and love the order it gives him; the order it has taught him. I am about to send his urine to Paris to be tested for evidence he is not secreting mercury because all he has to do is pee in a cup. This is just a small “sampling” of the cures I have tried, no pun intended. But basically it is my philosophy on cures
    I am an author and I have written about autism and hope to write more. For a sampling of that please have a look at my latest novel Confidential Sources, in which my son’s fictional alter ego is depicted. It is easily available on amazon or through my website http://barbarafischkin.com,
    or ask for it at your library. Confidential Sources is about how a family interacts with a kid with autism, how a brother does. And it is about some of the despair,as well as the triumphs of autism. thanks very much!!
    And Kevin thank you so much for providing this space and welcoming many views.

  21. anonimouse March 28, 2007 at 14:43 #

    Barbara,

    Can I ask why are you sending his urine to Paris, when any local hospital lab can do a comprehensive heavy metal toxicity screen? It wouldn’t be because a “special” doctor told you that you had to send it there, would it?

  22. Broken Link March 28, 2007 at 14:57 #

    Anonimouse, she’s sending it to Paris because she’s looking for urinary porphyrins, which are supposed to be a “marker” for heavy metal toxicity. Trouble is, they are a marker for all sorts of things, including the actual disease of porphyria, which bears no resemblance to autism. For more information see here.

    http://www.kevinleitch.co.uk/wiki/Theories/Porphyria

  23. Barbara Fischkin March 28, 2007 at 15:00 #

    For anonimouse

    Nope. I am sending it to Paris for these reasons

    1. The lab there can and will do what other labs cannot, which is screen for the metals that are not coming out. I am not a scientist but will be glad to look this up further if you need more information.

    2. It is wildly inexpensive and really a gamble. I’ll be glad to report back to others who can’t afford even a small gamble and I know there are plenty.

    3. The information came from another mother whom I trust for many reasons. Generally I listen to parents first, doctors after that.

    4. I am hoping to figure out a way to deliver the urine myself. (only kidding. but we do need a little levity here)

  24. clone3g March 28, 2007 at 16:01 #

    MJD: :A question for clone3g: Q. How do you think it differs?

    Not that my opinion matters, but I see more similarities than differences. Actually, the TV hypothesis is somewhat more plausible.

    http://www.autismdoc.org/

  25. Ms. Clark March 28, 2007 at 18:54 #

    Ooooh, what’s more reassuring than sending a frozen cup of urine to a lab in PARIS? Parents are sending their NT kids (and their own) urine to that lab it Paris because it’s a fad now, and they find that their NT kids have worse numbers than their ASD kids (I’ve read several parents now who reported this on mercury mom groups) this is just a stupid exercise in scaring people, there’s going to be a bunch of advice, Barbara Fischkin, that will go with the results (don’t forget to wrap the urine sample in aluminum foil) and it will involve lots of expensive vitamins and maybe some useless TDDMPS or TD something or other.

    Then you can make your son stink with a useless stinky lotion and feel better about what a good mom you are that you tried everything. That’s what this is all about. Maybe you could blog that on Huffpoof, Ms. Fischkin. Tell them all about social psychology of making yourself feel better through sending urine to Paris, and blog about the health fraud industry that preys on people like you with the help of people like you and Kirby and Stagliano and Huffington. Don’t be a sucker Ms. Fischkin, you just aid the frauds when you advertise this kind of stuff. And I won’t be reading your book(s) now that I see how gullible and uncritical you are of health fraud. Or maybe I will, so I can give them a proper rating on Amazon.com.

  26. eddie March 28, 2007 at 23:57 #

    “1. The lab there can and will do what other labs cannot, which is screen for the metals that are not coming out.”

    Sounds exclusive.

    Labcorp
    Porphyrins, Quantitative, Random Urine
    Porphyrins, Quantitative, 24-Hour Urine

  27. Michael J. Dochniak March 29, 2007 at 00:18 #

    clone3g wrote:

    The TV hypothesis is somewhat more plausible.

    Comment: Have you read the topological autism theory? In Yahoo do a search using “autism theory” as the key words and it should be #1 or #2 on the list. A very creative theory written by an autistic individual.

  28. notmercury March 29, 2007 at 12:34 #

    Barbara,
    Forgive me if I’m mistaken but it sounds to me like you are already convinced autism is caused by mercury or other heavy metals, therefore the metals must be there even if conventional labs are unable to detect them. Is that about right?

    It seems like you are determined to find a lab to confirm what you already know. Is it that you have doubts concerning chelation and you are hoping Parisian lab results will offer some sort of validation?

    I’m not sure if you realize this but urinary porphyrins are not an accepted indicator of heavy metal toxicity and the lab you will use is not measuring actual heavy metal levels.

    There have been many autism fads over the years and porphyrins are simply the latest.

    I wonder why we don’t hear as much these days about measuring ‘Mauve Factor’, arabinose, casomorphin, gluteomorphin, IAG, and other assorted urinary compounds. Those are so last millennium. Now we have porhyrins, and oxalates, and who knows what will be next. Don’t worry though, all lab results prove mercury toxicity.

  29. Lucas McCarty March 29, 2007 at 19:04 #

    It’s too much funk. That’s what it is, too much funk in the blood makes someone Autistic. Where do you think the precise sense of ‘riddim’ comes from?

  30. Ms. Clark March 29, 2007 at 19:36 #

    s’da bad blood, Lucas. Jess bad blood, thas wuts cozzin’ da autisms. gotsa get rid uh da bad blood.

  31. Maya April 2, 2007 at 14:11 #

    I think people are too harsh to Barbara. I like her “rule of thumb”, would like to know what Harold thinks. I wish there were less confrontation between parents who say they wish to cure and those who say they don’t. (BTW why “cure”? It’s infectious diseases that can be cured, constitutional conditions are eventually treated.)

  32. Kim April 5, 2007 at 06:58 #

    It’s quite obvious, Maya, that this is about moral superiority. It’s not about helping autistic individuals live better lives as autistics or about “curing” them. It’s about being better, smarter, better informed, more critical. You know, just better.

    I personally have no need to “cure” my son or to know why he is autistic. I just want him to be able to control his injurious behaviors. Right now, he puts himself in a great deal of danger on a regular basis. If ABA could help him with that, I’d be willing to try it. I’m not convinced that it would, but I would be willing to try anything that would make his life easier, safer and more fulfilling for him.

    I do, however, understand why some people feel that they need to know the whys and hows of cause and possible “cures”. For many, there is guilt associated with not knowing: Did I do something to hurt my child? Could I do something to help my child? What if I could and didn’t? How could I live with myself? Those feelings are not uncommon and there is nothing “wrong” about feeling that way–except that it eats up too much energy and introduces too much negativity into one’s life.

    Because someone else feels that and I don’t doesn’t make me better or more intelligent. Unfortunately, that doesn’t seem to be the view of most people on this particular site.

  33. Kev April 5, 2007 at 13:35 #

    _”Unfortunately, that doesn’t seem to be the view of most people on this particular site.”_

    And what exactly led you to that conclusion Kim?

  34. anonimouse April 5, 2007 at 14:29 #

    Nobody is saying that parents of autistic children don’t have feelings of guilt or confusion. The difference is that there are some parents who act on those feelings by doing “everything possible” to help their children to the point where they’re not really helping them at all.

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