A thought provoking blog by Donna Williams, consultant

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I don't know this blogger very well, I just started following her blog, she defines herself as author, singer songwriter and consultant on autism, well it is the internet, take everything with a pound of salt but she is advocating that parents are the experts on their child and a DIY approach, anyone ever heard of her? Here is the link and article, if you go directly to her website, she links the programs she describes:

blog.donnawilliams. net



Donna Williams’ Blog
Ever the arty Autie
DIY Autism therapies… how to stop payrolling the professionals
January4

Economies are going down the spout, there is enough OPEN instruction out there to start training yourselves so you can spend your income on a trampoline, a pool, some horse riding, drums or anything else that you’d have had no money for if you were PAYROLLING the professionals who are living off the one size fits all PATENTED products they are selling you. 2012 is the year to stop bleating like a sheep. Take back the power. I have empowered parents to do this since 1996. Step up to the plate. Test your own potential and be part of your own solutions.

In other words, parents in the 60s and 70s created homemade individualised programs for their kids… then it became a payroll for patent junkies… take the power back… there’s enough online training there for any family to make a start for themselves…. what, you won’t do it perfectly, exactly as a highly paid professional? so what! maybe your adaptation will fit your particular child even better!

Working as a consultant with over 1000 families of kids with autism, I’m familiar with watching a vast number of kids in varying programs and which kids tended to get the most out of which types of programs.

TEACCH
I feel Teacch works best for kids who work best in solitude, enjoy and feel rewarded by solitude, like only intermittent social contact and prefer to be left to ‘get on with it’, are methodical, systematic, enjoy a high level of structure.

You can pay mega bucks and take a second mortgage …. or teach yourself TEACCH

OPTION/SONRISE
I feel Option/Sonrise is primarily a bonding program so it best fits kids who main obstacle is that for whatever reason (including severe sensory processing issues) display attachment disorders. Option/Sonrise is about winning a child’s trust but also teaching families how to observe and not invade. Done well, it is a relatively indirectly confrontational approach so may reasonably fit kids with Exposure Anxiety who have compulsive avoidance, diversion, retaliation responses.

You can pay mega bucks and take a second mortgage …. or teach yourself Sonrise/Option

FLOORTIME/RELATIONSHIP DEVELOPMENT INTERVENTION (RDI)
These approaches are relatively indirectly confrontational approach so may reasonably fit kids with Exposure Anxiety who have compulsive avoidance, diversion, retaliation responses and those hypersensitive to the social claustrophobia of more directly confrontational compliance-based programs. Floortime/RDI both focus on using the child’s own interests and co-opting these into constructive activities rather than trying to force compliance of impose directions the child has no interest in. RDI would suit those who enjoy learning through doing and builds inherent reward into meaningful activities rather than relying on constant external rewards.

You can pay mega bucks and take a second mortgage …. or teach yourself Floortime
You can pay mega bucks and take a second mortgage… or… teach yourself RDI

APPLIED BEHAVIOURAL ANALYSIS (ABA)
This is a highly marketed, highly lucrative multi billion dollar INDUSTRY with vast offerings of jobs to new psychology graduates to earn up to $60,000 per family, per year to enter their home and take over as the expert in the home. That being the case expect that if you payroll such a service, exiting the program may not be as easy for you as entering it and you may find yourself having to argue the case for your right to make that choice.

Psychologists are wonderfully useful if you have a mental illness. Young children can be hypersensitive to being socially pursued by directly confrontational adults seeking to justify their own pay packets and if these therapists come from a perspective of viewing autism as ‘pathology’ in need of correction through an intensive compliance based program with external rewards, then this can lead to overdoing the child’s sense of itself as a ‘case’, a therapy case.

The ability to comply for external rewards is a skill that may fit with mainstream school and later employment. But applied intensively (ie up to 20 hrs per week) to a child under 3-4 years old, is in my view a precarious choice that should be weighed up with the child’s personality and equal opportunities to develop an identity broader than being an ABA ‘client’.

ABA may best suit kids who are highly motivated by continuous praise and naturally strive for external rewards. These are the type of personalities which will naturally be motivated by achievement, recognition, and admiration. Temple Grandin never had ABA but had a strict nanny she felt used an ABA style approach and so is an advocate of ABA. Temple may well have had the kind of natural drives that fitted this type of program but many children with autism will not fit this personality profile.

Those driven by a need for routine and acceptance may fall into a ‘pleaser role’ and be at risk of prompt dependency, learned helplessness and dependent personality disorder. Those with a high level of Exposure Anxiety or who are naturally Leisurely, Idiosyncratic, Solitary or highly Vigilant/Autonomous may be at more risk of developing progressive behavioral issues in a highly directly confrontational program like ABA. Subsequent development of acute anxiety disorders in these types of kids are not unheard of in those experiencing intensive ABA where they have experienced this as socially entrapping. The majority of ABA therapists are also female, often in their 20s and have not yet had children (nor autistic children) of their own and putting boys into intensive compliance based programs with these psychologists as their managers may have later implications for their identity development and rejection of skills they’d earlier complied with.

There is no reason why a family can’t set up and operate their own ABA style program if they wish to.
There is nothing highly qualified about intensively fixating on your child in a program with compliance as its basic goal and a system of external rewards in place. Parents can and have set up these programs for themselves in spite of being told by ABA therapists that they are not professional enough to do this ‘properly’ on their own. In fact families sometimes felt they ran the program better, more flexibly and more suited to their particular child.

You can pay mega bucks and take a second mortgage …. or teach yourself ABA.

You can also make a mixed program with an hour of three different approaches with breaks between programs or create one designed more specifically for your particular child.

Donna Williams, BA Hons, Dip Ed.

I agree with her underlying premise, that there is no reason you can't figure out how to provide the therapies on your own, if you want to go that route, and be successful with it. Much of what is done professionally does piggy back off of things parents learned working with their own children first.

It will all depend on the unique individuals involved, of course.

Nothing is one size fits all.

She's right. The main issue for me is time so I do ABA and speech therapy with my son but I need an home therapist and an aid for school (Italy health service doesn't provide an ABA tutor).
It's not only a budget issue, I need to decide what type of education I want for my son and for this reason I have to be able to educate him. For instance, I don't repress stimming and I don't use adversives and I want therapist to do this also.

Yeah. She wrote an autobiography consisting of two books in about 1993 called "Nobody Nowhere" and "Somebody Somewhere." (Those were the first things that I ever read by an autistic author and are what sparked my interest in autism.) She'd originally written the first one as a way to make sense of her life -- she hadn't intended to publish it until someone else read it. Anyway, the books did well and that allowed her to start a career in autism consulting. I think she went back to college and acquired certifications/education in psychology and so forth, in order to be properly certified and know more than just her own internal experience. (She's dx'ed with "autistic disorder.")

She seems to focus on recognizing the unique and particular things that a child needs to have addressed ("autism fruit salad"), as opposed to considering autism to be basically one thing with a narrow presentation. I.e. Temple Grandin says forced eye contact helped her, while Williams says that that would've sent her into 'retreat' and that that's why it's important to figure out which approach works for which ASD kids.

She's an artsy type and (IMO) has interesting things to say about what she calls "sensing" (certain autistic perceptions). That stuff is in a number of other books written over the years, such as "Autism and Sensing," and "The Un-lost Instinct." Was also a founding member of ANI (Autism Network International).

While you can do ABA, I highly recommend at least working with a company to help create programs and teach you how. It is not as easy as reading about it and doing it. It takes skill and experience. Good companies should be teaching parents how to do it on their own anyway.

Ditto to that. "Teach yourself to do it" sounds really good in theory, but it should be the goal of any decent therapy anyway. I've really found it to be beneficial to have an experienced professional help us do a post-mortem when we have a really difficult day, who can model appropriate behavior. That being said, we just ended one-on-one therapy for DS and are sticking only with the social skills classes - I don't feel so lost anymore (thanks to many of the aforementioned professionals, plus a lot of help from here.) It's really hard to get that from a book (plus, a book doesn't hold me accountable when I'M the one being rigid.)

Much as I love support groups with other parents, either they're just as deep in it as I am and floundering just as much, or you've got no idea what I'm dealing with. I've found that without an objective observer, relying solely on other parents can mean I model their bad behavior instead of the good stuff.

However, having spent crazy amounts of money on RDI with very little payoff, I think there's definitely some truth here. I've long advocated here for people to start with what their insurance will cover, and go from there.