The self-appointed expert on autism - unqualified

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http://autism.about.com/bio/Lisa-Jo-Rudy-117550.htm

This woman has no relevant qualifications for the claim that she is an expert on "autistic spectrum disorders", and she is offering consultancy services. I believe she is being deliberately misleading and the expertise claim is outrageous.

She is a mother of a child with autism, advocates ABA, and promotes the agenda of Autism Speaks. Google her name and you find the same expertise claim repeated. Needless to say, one of her claims is that ABA is "the gold standard" of treatment for autism.

Whether or not you care for ABA, when done right and with appropriate goals (which is too often not the case), it has improved the lives of many so-called low-functioning children immensely.

The right goals, of course, are to teach skills that will reduce the child's stress instead of goals that merely involved reducing the behaviors that are efforts to relieve that stress.

What would you describe as being the gold standard?

I don't have anything I can put into a single sentence; I have lots of advice for parents, but it is a whole book's worth of parenting suggestions.

EDIT: I have since seen the thread about Autism Speaks and their promotion of ABA as a gold standard. Have yet to delve into it, but that discussion could well color my perception of this individual. Also, note, I did NOT do any research on her nor do I know anything about her; I was just surprised that thinking of ABA as a "gold standard" was considered so offensive. Guess I've missed too many discussions!

Last edited by DW_a_mom on 02 Mar 2015, 2:45 pm, edited 1 time in total.

I don't think there can be a gold standard when knowledge is so limited ie we don't know what causes the individual differences of people on the spectrum, but we do know that everyone on the spectrum IS an individual, not a carbon copy. There is no gold standard, there are different approaches, and the idea of ABA "helping people" only recalls to me the very wise observation that help is the smiling face of control, especially where power is unequal between the parties. The claim of "gold standard" is merely propaganda in relation to ABA. As Goebbels discerned, repeat a lie often enough, people believe it. (Yesterday I read an article by an "autism mum" advocating ABA for everyone on the spectrum, regardless of age, just because they are on the spectrum. We could make ABA concentration camps perhaps? With autism mums as guards while experts torture us with cattle prods?) I hope you find that as appalling as I do, I am fairly sure you will..

Of course that is an appalling idea and of course it could never happen under our current laws and ideas, making it an irrelevant example.

Instead of fighting against ideas because of unlikely extremes, fight to make sure they stay on appropriate paths, ie done in ways that actually really do help the child, and not just a parent's perception of the child. We have enough children who have moved past their communication barriers to know what issues they, themselves, are glad have been solved for them. We should simply make sure the "experts" focus on and use that. IMHO

I do know all of it is an extremely sensitive topic, even with my own son. We have never used ABA, but we and the school have worked with him extensively based on perceived needs. While a small part of him is grateful that he has learned how to succeed in the world, since that helps him reach his own goals, another part of him mourns what he worries he may have lost, ie too much of his natural self. I've told him that there is no doubt in my mind that his natural self 100% still exists and that few fail to see it, but so many NTs think he is supposed to be proud of overcoming some of his challenges that they continually tell him how great it is that no one would know he is ASD if he hadn't told them. And that makes him feel like he's lost an important part of his identity. But me? I can so clearly see the difference. He isn't like the NT world, he doesn't think like the NT world and never will; all he has learned to do is understand the NT world and adapt as needed. He is still very much the same person he always has been, but without having to hide so often from stress and without the constant conflict of having people misunderstand him. It wasn't happy for him the way it used to be; he naturally wants to engage with the world but I saw him withdrawing more and more just out of self-protective necessity. He was stressed ALL the time and it boiled over often. Of course he doesn't remember all that, but I do. At least now he has choices, instead of always being forced to act defensively. All of it is most definitely a very fine line, and I spend a lot of time talking to parents about making sure that we don't force our kids to lose themselves in the process of learning to adapt to their challenges. Most parents just want their kids to be happy and have the lives the kids, themselves, would most want (with the exception that they should try to be self-supporting, if possible, for pragmatic reasons - just like every child anyone raises). We don't want to force them into anything beyond what is necessary to survive - same as with any child.

Last edited by DW_a_mom on 02 Mar 2015, 3:07 pm, edited 5 times in total.

As you know (I think), in science (even "soft science" like psychology) there are many different kinds of validity, and for anything to be accepted as "gold standard", all measures of different subsets of validity must be satisfied. ABA falls woefully short on most of them, yet is touted as if it met all of them by the touts. This subterfuge and propaganda is rarely challenged, so we have a very uneven situation - parents and AS touting assumptions as "facts" and the "gold standard", recipients of "treatments" who are powerless and effectively denied the human rights of children in any other country but Somalia.

US Department of Health and Social Services report - this demonstrates how inaccurate and ludicrous the claims of ABA as "the Gold Standard" are:

http://effectivehealthcare.ahrq.gov/ind ... ductid=651