Evidence-Based Practice for Children with Autism

That's all well and good as long as the pharmaceutical companies aren't funding the studies.

I'm an 'autism parent'. Children with autism - my son (14) high functioning/Asperger's- will need a complex cocktail of these approaches. However, nothing will work well if the setting the child is in does not follow recommendations, or has their own view on what is best.? eg: SELF MANAGEMENT/VISUALS : "He has a timetable, and there's a clock on the wall, so he should know when to go to lessons" (I provided a phone with alarms set for lesson times, and he still misses some - and the staff who prefer to get him, don't always!)?? This, I hasten to add, is a specialist setting, independent, and paid by our County Council. He is already on his 8th change of setting - nothing really fits - a child who is not 'good enough' to be in a specialist Asperger setting (and that might be many miles from home, so he wouldn't want to go there) and not 'bad enough' to be in a 'specialist school for SEN'.?? SOCIAL SKILLS TRAINING - no set 'programme' written down - mostly done through a few ball games based around 'tag' (not wise!) and board games. (Hmmm!)?? SELF MANAGEMENT -? w h a t ??!!?? This is tricky. There are neurotypical adults who can't self-manage. My son, as an example, bright though he is, 'forgets' he is hungry or needs a drink - but then will only accept a minimal number of foods and drinks onto his 'conveyor belt'. I have to remind him that he needs some protein that day, or needs to drink more water, as lemonade is not the best to stay healthy.? He will stop a piece of writing half way through a sentence, having been advised to write 'about 100 words' (200 he would consider far too much to write.? Any kind of 'TARGETS', he's not interested in. Even a day out has to have some real intrinsic value to him before he will deign to come with us. Targets in his school setting, he ignores - he goes from day to day, not too bothered if he misses classes ('his fault' or 'teachers' fault') --- then will have a few moments' deep concern that he isn't learning enough! It isn't just the current setting. One (mainstream) had him leave virtually the moment he got a Statement of Special Needs; one (mainstream with an autism base) said he was so aggressive, they didn't even believe he had autism (!); one (also mainstream with a base) understood little about autism- they repeatedly put him in a 'quiet room', despite my warnings - he was afraid to go upstairs or downstairs in our own house because he was afraid of the empty space between, then they wondered why he got even more angry and demonstrative when they shut him in an empty room. On one occasion, FOUR members of staff were holding him 'spreadeagled' to try to move him into the other room. At the time, he was still quite small and thin - I could literally pick him up and carry him under one arm! In the UK, we have had Statements changed to Education, Health and Care Plans (EHCPs) - It has taken TWO YEARS to get my son's EHCP into something like an acceptable and useful document - but will the setting follow what it says? Health don't want anything put into it unless they have agreed to it beforehand, so two drafts of the EHCP have been sent to me with nothing in the Health section- despite my son having been on medication for about 7 years and seeing a psychiatrist for that time too, every four to six months. This IS now in his Plan, but only because I insisted that in the February (that became April...slow systems) review that Psych, Ed Psych and Autism specialist were involved in new report writing.? Even THEN, last week, I received the 'final version' of the EHCP - still showing (crossed through) the parts they intended to remove or change. This was after I had got them to send me a copy electronically, that I would go through and remove all the crossings out and check the wording. When I called the office, they asked if I was happy for the document to stand. i told them I was happy only with the copy I sent them, with nothing crossed out, because that was the actual final document, not what they sent me. My Local Authority in March, I believe, put a stop to new applications for EHCPs until the end of June, because they had to catch up with the Plans they had in hand! (Holding back, potentially, necessary recognition of needs in many children.) The systems do not work The staff don't 'get it' There is too little funding The children can be ever-changing, so the 'goal posts' for their needs keep shifting - which means that as the system and staff can't really catch up and cope with the changing needs, the children will suffer in the long, long, long run. It's great to have all sorts of theories, and I do appreciate your writings here, but getting these theories into practice is quite another thing. I suspect that the rise in recognised autistic behaviours began (though for most of the time without 'labels') with the industrial revolution: people moving away from their traditional homes and lifestyles. I am not advocating a return to the 'old times', but when sons learned a job from their fathers, and daughters followed and learned from their mothers, everyone knew everyone (along with their foibles), and the weaknesses and strengths of individuals were known by the community, there would probably have been some advantages for the autistic child growing up - without the 'mirror' of modern society. One idea persists: it seems to be accepted that if you turn out a 'half way decent' person, that's good - ahead of any learning. So how will these children be able to work when they are older????? Social Skills are seen as a be-all and end-all, not as an in-tandem feature of education. As the 'Asperger Experts' explain on their webcasts, sensory issues must be addressed first, or the 'funnel' gets clogged up and no other learning can get through.? Yet when you look at any programmes for autistic children, Social Skills figure over and above everything else, and are considered to be the key to success.

I appreciate this explanation of evidence based practice. This is exactly in alignment with what I am being taught as a Teacher in pursuit of my Master's Degree in Education: Autism. I am currently researching evidence based practice, working on Teacher Action Research, participatory research where Autistic children have opportunities for full inclusion, leadership and enhancing skills through Peer Mediated, Modeling, Social Communication skill enhancement in high school age kids. I am also focusing on establishing each individual's Zone of Proximal Development, (Vygotsky, 1978) and utilizing Self-Advocacy and personal interests as a way to help students build interpersonal relationships, social communication, peer collaborations and self determination. I have planned for these students to work together with non-disabled peers to help navigate social understanding and acceptance in high school. I will have them collaborate to work on a Service Project to have autistic kids help "teach others" about disabilities acceptance and inclusion to help eradicate stigma and stereotypes and promote social equality among all ability level peers. This is exactly what the 100's of scholarly Journals have lead me to develop, looking at it from educational and psychological perspectives as well as "listening to the Self-Advocates from ASAN, NOS, Thinking person's guide to Autism, Autistic Adults to help build better learning environments for the future of all autistic children to have the tools necessary to transition to adulthood after the protections and services provided by IDEA run out upon graduation. Kudos to you Dr. Wilkinson. I am against all forms of aversive practice and manipulating behavior to appear someone else's definition of what normal should look like. Rewards and tokenism only goes to a point and it usually backfires as social development and expectations change over lifespan. (Floortime is a great tool with preschool aged children, I do agree with that) but beyond then a child's growth for social-emotional learning is best learning by the above methods. Music and Art are also wonderful therapies in addition to methods above.?

All of these are tools for teaching a child to behave as "normally" as possible, usually in a school setting. While they're obviously helpful for that purpose, there are two issues with what you've written. First, none of these interventions address engagement or emotional growth -- which is the purpose of interventions like Floortime, which are not mentioned here. As a result, the learner is unlikely to have an intrinsic motivation to do any of the things they're taught: all the motivation comes from the instructor, who may offer treats as a reward for compliance. The vast majority of these interventions are forms of training -- not engaging or teaching in the best sense of the word. Second, the reason that behavioral interventions are "evidence based" is that they are built around metrics and specific extrinsic "behaviors" that can be observed and checked off on a list. Therapies that engage children in symbolic play, imaginative conversation, artistic endeavors, etc., are MUCH harder to measure in that way -- and, as a result, they wind up being considered "unproven." How do you PROVE the value of learning to play the clarinet or how to admire art in a museum? What is the "purpose" of actively and intentionally engaging in make believe? These are critical humanizing skills that are left behind by behavioral interventions.

Awesome! Thank you greatly.