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Rougher Waters Ahead for Autism Special Education?

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As a parent, I deal with one child who was diagnosed with severe autism at the age of three. She is seventeen now. Upon that initial diagnosis we did some precise things. We put her in a specialized preschool room with an amazing teacher and devoted staff. We implemented a lot of speech therapy above and beyond what the school provided. We even implemented in-home intense programming for about three years; that is, up until the time she was mainstreamed in kindergarten with the help of a full time educational assistant.

I went to kindergarten with my daughter for a while, since autism was rare at that time - it seemed somewhat acceptable to have me there since I needed to offer some interpretations for my only slightly verbal daughter. In a sense I was a most precise interpreter for my daughter, but only her, since my ability to understand her so completely would not transcend to another child with severe autism; one whose history I had not followed. I had become my daughter's expert, with the help of mentoring from so many professionals that had come into my home to bring me up to speed.

Kindergarten was considered a surprising albeit tentative success and I would have to say it might not have been a success but for the greatness of the teacher and educational assistant - and the absolute brilliant peers that were in the classroom alongside my daughter. To say these kids were brilliant is not an exaggeration and I have notes from the kindergarten year that prove such. The many skills needed in order to experience success in kindergarten were pre taught to my daughter via the intense ABA type instruction and preschool, and so we had taught the kindergarten test before she ever attended kindergarten.

There eventially became the very important considerations about what might happen the following year in first grade; the concerns were many times kept hidden, simply because one could never know for sure what type of progress might occur in my daughter's overall development. The label autism, does not offer exactness as far as knowing what educational requirements will come up from year to year. Every child who receives the label presents differently, they really are like snowflakes!

First grade went okay, but there was a downward trend as far as performance. Stagnation and regression seemed to be rearing its head. Behaviors began to get the best of my daughter. Some might be explained from a behavior perspective, as in she was doing it to get her way. However, other behaviors were not at first recognized for what they were. They were medical concerns; years later they would be described as "catatonia", "absence spells" and " automatisms".

So eventually I recognized that some of my daughter's presentation might be considered more of a medical concern - not just behavioral science, ignore and redirect stuff. Even hallucinations were evidenced while the neurologists gave her manifestations all these differing names. Once my daughter was able to actually verbalize things, she was able to express the content of the hallucinatory events. Psychosis made our journey less exact as far as interventions for helping my daughter. I did not even want to involve the school in the issue because the involvement in psychosis was so great, and proved to be refractory to treatment. Now the behavioralist mom who had refused medication as an earliest intervention option, would accept the need for one medication trial after another.

For several years the doctors helped us try to find medication that might give relief.  I was compelled by the doctors to accept placing my daughter in a specialized day program after about the second year of her refractory ordeal, even though we had not yet identified medications that gave relief. There was an ebb and flow to her presentation at the day program, and at times they would have to call and have me pick up my daughter because behavioral interventions were not successful and the psychosis, too great. Most thought my daughter really belonged in the state hospital. That being said I was allowed to continue to bring my daughter to the day program, but if things went too wrong I was required to pick her up. I was okay with it though because the people at the school kept trying and didn't force the issue of placement away from our family.

Eventually, medication was identified that brought things under control for my daughter. Medication and a constant supply of differing forms of redirection; that constant supply of redirection eliminated many of the bad patterns that had developed during the several years long worsening psychosis. While it was hard to explain the underpinnings of the differing patterns (thought processes) that had developed and how to redirect against them I could at least do these things when my daughter was at home with me, especially once the medications gave relief from the manias and aggression. Since my unique form of intervention was too hard to explain, I simply hoped the other behavioral supports provided by the day program would offer a structure that would give my daughter more control while at school; and they did. She eventually was able to transition back to regular high school special education. The transition was eventually a success, but there were many obstacles for the teachers simply because of my daughter's unique, difficult and complicated presentation.

It would never be appropriate to think that these teachers can have an immediate understanding of all that is entailed for such a complicated child. For those in special education each child is a learn by doing experience, but in more extreme terms since the baseline of the autistic child might better be describe as baseline squared. There is the baseline when the child will do quite well, and there is the baseline where all hell might break loose. (Periods of sustained better function might last weeks or months, but rarely through a whole school year.) When all hell breaks loose that worsening baseline is one that is exponentially difficult to intervene upon and understand. The intervention required will in some ways be exact, but also unique to only that child.

Best said, insightful response from the teacher to the fluid nature of the differing baselines is what is required. This is not an easy task and cannot be so simply generalized over an entire population of those affected with severe autism. With the autism statistic rising, what is on the horizon for the special education teacher? I have only my child to deal with, but the teacher must deal with a room full of them. Each unique in their baseline squared. This is concerning, especially given that some presentations include aggression. It appears that not only is staffing a concern, but unique placement that offers safety when the autistic child is struggling with the more dangerous behaviors. My desire is the see teachers being given the support they need, but this includes giving them a looking glass in order that they know what might be expected of them in the future as the rising statistic for those on the severe end of the autism spectrum finally ends up in their classroom. There may be some rough waters ahead.

Hello, Dr. Wells - a retrospective look at autism intervention, circa mid 1990's thru 2000's.


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