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Implications of Therapy

  • Posted on September 20, 2009 at 12:00 PM

Bev, of Asperger Square 8, has taken on an excellent project that has opened my mind to many new thoughts.  It’s called: A Checklist of Neurotypical Privilege.  While the entire document is worth reading (I highly recommend it) one piece stuck out and pricked me – mind, body and soul.

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

The implication here is that for neurotypical children education is called education, but because neurodiverse students sometimes require different lessons, different teaching styles, and different techniques, their education is called therapy.

I consciously try to foster my children’s sense of worth and power.  I try to build them up so that they and others can better recognize their potential.  I do not, in any way, consider my children “less” because they are not neurotypical.  And yet, I never consciously thought about the implications of the use of “therapy” to describe our efforts to meet their educational needs.  The specialists who assist us in designing strategies and “interventions” to help my children learn are called therapists and they perform services that are funded as therapy.  I never once questioned these labels.  Now, after reading this document, thinking about it, and letting the issues it brings up fully penetrate my mind and my heart, I’m amazed and chagrined that it never occurred to me.  I’d long lost my comfort with the use of “intervention strategies,” which is a common phrase that’s applied to services intended to assist individuals with special needs.  But therapy always seemed completely innocuous.

When I think about the purposes of therapy, however, the point becomes clear.  The reason my children require therapy is because they do not learn all the things they need to know in a neurotypical manner.  Therefore, to teach them the things they need to know, we need to use different strategies, techniques, and behaviors to help induce learning.  Learning is still the goal.  So, whatever the means, teaching and educating are still the verbs.

Comparatively, consider the teaching strategies sometimes used with at-risk youth.  There are many, from charter schools to special programs, but they’re not called therapy.  These are children who often have neurotypical development, but face challenges not experienced by mainstream society.  To educate them as we should, we need to find ways to compensate for those challenges and this requires changes in teaching techniques.  In our language, we recognize that these differences and unfortunately we sometimes use language that denigrates the worth of the children, but we don’t call it “therapy.”  That’s reserved for students with disabilities.

Just as kids who perform below average or have problems due to their experiences, children who perform above average get specialized educational programs as well.  When I was a student, I attended classes that were labeled “differentiated.”  More was expected from me and my fellow classmates than our regular peers.  Specialized lessons were prepared for us and techniques were used to prevent the typical boredom children with above-average intelligence often experience in school.  It was differentiated, but still education – not therapy.

So, why do we use therapy to describe techniques used to teach students with special needs?  One obvious answer is that it hasn’t occurred to well-meaning people that the word might be offensive or inappropriate.  This is not a reason to continue using it, but it does explain part of the problem.  Like myself, there are others who have never considered the word might be controversial.  If this were the only barrier, change would be relatively easy.  Not genuinely easy, but more easy than it would otherwise be.  Unfortunately, this isn’t the only reason.  There is one good reason I can think not to change the use of the word.  Now, I caution you, it’s not a very good reason, in that it’s ethical or right.  It’s a good reason in that it benefits those the educational services are intended to benefit.

Simply put, the reason to keep the “therapy” label is funding.  Specialized educational services are expensive.  Funds are not readily available for these services.  In many American schools, the only reason these services get the funding the need is because it is federal law that they be available.  In many American schools, parents have to fight to get school officials to recognize that the services provided must be dictated by the needs of the child, not be the availability of resources.  This is a legal right won in the courts.  And it’s still an issue.  By changing the wording from “therapy” to “specialized educational services” one risks losing some of the oomph that “therapy” has.  Whether it’s accurate or not, whether it’s ethical or not, whether it’s true or not, “therapy” has a more respectable reputation with hints of medical necessity that “specialized educational services” lacks.  It’s all about shades of meaning here.  The research behind therapy and that supports its use is better funded and better supported than the research behind specialized educational services.  Programs for at-risk youth and for children with above average intellects are cut before students with disabilities, because the programs for students with disabilities have been propped up by law through the research that supports the benefits of therapy.  By changing the wording, you change the meaning in the minds of some of those you communicate with (which, admittedly is part of the point) in such a way that it’s detrimental to the programs being funded.

Now, again, I’m not saying that it’s a good thing that other programs are so easily cut from school budgets.  I don’t believe that.  I believe that all children, regardless of what their needs are, should get the educational services that fill those needs.  Society’s sense of the value of unique individuals has not progressed to that point yet.  By pushing for the human rights implications of education over therapy, I perceive a risk in damaging the fundability of those education services.  Ideally, the human rights implications would take priority.  They should.  But, the reality is that these services are often necessary.  I’m reluctant to advocate anything that would endanger their availability.

Which is not to suggest Bev’s document does any such thing.  I believe the purpose of the document was to open our minds.  If that’s true, then it certainly worked for me.

Health Effects of Activity Limitations

  • Posted on August 17, 2009 at 12:00 PM

Dr. Whitney P. Witt recently published a paper, “The Impact of Childhood Activity Limitations on Parental Health, Mental Health, and Workdays Lost in the United States,” concerning her research determining whether children with activity limitations (i.e., children whose activities are limited in comparison to their age-appropriate peers) affects the physical and mental health of parents.  Not surprising, Dr. Witt found, “Parents of children with any activity limitation were significantly more likely to experience subsequent poor health and mental health.”  If the activity limitations were on-going and/or multiple children lived with activity limitations in the same family, then the odds of poor mental health were significantly increased.

The results are not surprising.  She concludes:  “These findings indicate that child health can importantly influence the health and work behavior of the family and that health care providers should consider a family-centered approach to care.”

I don’t disagree.  Family-centered health care is important.  But, and this is a BIG but, there is a time-tested method of assisting these families.  Witt touches on that as well:  “Employers should consider offering respite care or additional support services for families whose children have activity limitations. This could enable the parents to miss less work and may improve workplace productivity.”

Neither my husband nor I have ever worked for an employer that offered such a benefit, though our work history has suffered due to the special needs of our children.  However, Wisconsin has an excellent (read here: expensive!) autism program that provides respite care to our family.  It is a sanity-saver!  Respite care is vital when you’re raising children with special needs.  Unfortunately, it seems funds for these programs are too few, spread too thin, and too limited to benefit as many people as need it.  For example, though these services are widely available to Wisconsin families with children with autism, families with children experiencing other special needs and activity limitations do not share in these same benefits.

There is a cost to raising children with special needs.  The cost is real, whether it’s spent preventatively or on treatment.  Our families are worth the cost.  Our productivity is worth the cost.  Our health is worth the cost.

“There are substantial health, mental health, and work implications for parents caring for children with activity limitations.  Addressing the needs of these parents could help improve the health and well-being of the whole family,” Dr. Witt said.  And she’s right.  It would also make for better employees, better citizens, and a better nation.