My daughter is “cured” of autism. She was identified as having PDD-NOS at the age of 2, and lost the label at the age of 5 after a tremendous amount of therapy and her verbal skills reached within age appropriate levels. She does not qualify for services or meet the established criteria anymore. She’s “cured”.
However, although her verbal abilities are within age-appropriate levels- which actually means about a year behind her peers-
- Her visual memory is approximately 2-3 years ahead of her age peers.
- Her ability to visually disciminate is 2-3 years ahead.
- Her mathematical skills are 2-3 years ahead.
- Her ability to decode and verbally read aloud are 2-3 years ahead.
- Her logic and problem-solving skills are 2-3 years ahead.
- Her social skills… are about a year behind age peers.
- Her ability to comprehend what she reads is about on grade level.
- Her processing speed for verbal information is about a year below.
- Her subtest scores on IQ tests look like a mountain range- high to low.
- Her overall IQ? Slightly higher than average.
- She has significant sensitivities to texture; and she fixates on subjects.
- Her interest in fashion? Completely typical
She is a classically “twice-exceptional” child- gifted in many areas, with a disabling condition in others- but not low enough or high enough to qualify for much of anything.
Does she have autism? Legally- no. But in our day-to-day living? Yes. She works around her autism with no educational support, although a Section 504 for social issues is being discussed. Does being “cured” mean that she’s now magically typical? Heck, no. We struggle with the same issues we did before she got “cured”- but they’re much less intense now. Taking away the label did not mean that the problems vanished. But the intervention then helped with the management of them now.
According to the New York Times, scientists are just about to dramatically reduce the recent “epidemic” and “cure” autism. No- there have been no magical interventions. No, there have been no sudden scientific breakthroughs. They’re going to define it out of existance. Because we all know that if you don’t label it, it doesn’t exist, right? Right?
The old definition required that a child exhibit characteristics in 6 of the 12 criteria in the areas of communication deficit, social deficits and repetitive behavior. The proposed new definition requires that a child exhibit at least 3 deficits in communication and social behavior and at least 2 in repetitive behaviors. 3+2=5. While 5 may appear more inclusive than 6, the issue is that the new definition requires that a child be more level in their areas of challenge. The distinctions between “Aspergers”, “PDD-NOS” and “autism” will become submerged into a high/low continuum. Some people fear that children who are less diffuse across the spectrum, but more intense in particular areas may be left out of the definition.
This, by the way, is similar to identifying gifted children and requiring them to be strong in everything. In the gifted education field, we have worked really hard to not leave out children who are really strong in one area, recognizing that few gifted children are that “level” in their abilities.
When we were Googling the issues associated with Elizabeth, we had the word “autism” to look up, to find out information. We had a label to use to explain her differences- and to seek remedies. We had information to read and we had understanding of her differences. Without that label, she would have been perceived as a difficult child, a spoiled child, a child who wouldn’t talk. I wonder how many parents will try to beat their child into submission because they perceive the behaviors as the child’s fault, as their fault. Without a label, behavior becomes very personal.
Because of her label, Elizabeth received therapy- lots of therapy. Daily speech and occupational therapy through the publically-funded Early Intervention services were provided, and I was able to research ideas and things to do at home. With no label, there are no services, and with no services, there is no determinant of growth. With no label, parents are dependent on dealing with symptoms, not understandings, and a child’s ability to receive help is dependent on a parent’s ability to pay for interventions of fuzzy problems, rather than a more cohesive set of services. Without a label, developing a child becomes even more dependent on socio-economic status.
One of the most critical issues is the issue of funding. With autism being “cured by definition”, there are no services and if there are no services, there is no funding With no funding, the progress that has been made in the causation and treatment of autism dwindles. There is still an awful lot we don’t know about autism. Ignorance is understandable- ignoring is not. Without a lot of labels, there is no reason to move research forward.
Elizabeth was fortunate. She was “cured” of autism- after intensive therapy, after intensive research. She had to get a label to learn how to live with her issues so that she could be “cured”.
I fear for the children who will be “cured” of autism by changing definitions- who will find that there is no help for their issues, and there is no cure at all.
I want to end with a call for action- but I’m not sure of the direction to go. Certainly, it is important in the development of autism as a field to have more and more cohesive understandings- for funding purposes, for research purposes, and for intervention purposes. If the label means nothing, then the research can find nothing. More recent studies are finding that the impact may be less than expected. However, it must be realized when examining a change in a definition that the problems faced by individuals with autism are real problems- and redefining them doesn’t remove them.