Three simple rules in life:
If you don’t go after what you want,
you’ll never have it.
If you don’t ask, the answer will always be no.
If you don’t step forward, you will always
be in the same place.
—Nora Roberts
Principle: Even with the Internet, learning the ins and outs regarding learning disabilities is an uphill battle. Learning about disabilities and different brains is anything but static; it’s up to you to keep up with this ever-changing landscape. If you’ve been doing that, then you know that the American Psychiatric Association did away with the diagnosis of Asperger’s syndrome in its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which appeared in May 2013. People with Asperger’s symptoms and behaviors are now evaluated under the broader diagnostic category of Autism Spectrum Disorder.
Why is this reclassification important? The DSM may indeed be, as the director of the National Institute of Mental Health (NIMH) and my Boston University School of Medicine classmate Tom Insel, MD, says, less of a bible for the field of mental disorders and more of a dictionary. Still, its diagnostic codes affect treatment decisions, insurance benefits, and government-mandated rights and supports, including what accommodations schools and employers must provide. If someone diagnosed with Asperger’s doesn’t qualify for an Autism Spectrum Diagnosis under the DSM-5, their families will have to fight harder to make sure they keep those services. Those necessary services and accommodations might even be denied altogether.
When I last spoke to Tom (who I admit at times is a lightning rod of controversy), we both agreed that it’s probably not correct to merely list the terminology Asperger’s as a type of autism. While Aspies are somewhere on the autism spectrum, they have characteristics that make them a bit different, maybe even unique.
The Aspie community is in an uproar about this loss of identity. People who have embraced the Asperger’s label, who proudly call themselves Aspies, are wondering, “If this is taken away from us, who are we?” The change in nomenclature may most affect those Aspies who are not obviously struggling. For instance, some Aspies who are doing well in college, can pass socially, and can think their way through social situations may be off the radar of a lot of diagnosticians. But beneath it all they’re still suffering, still in need of services on campus, still in need of accommodations. Those are people to be concerned about.
What should you, the parent of a child diagnosed with Asperger’s, do about this big change? Here are some suggestions from the website of Dan Coulter, the author of Life in the Asperger Lane. Adults diagnosed with Asperger’s can take the same steps on their own behalf.
1. Review your child’s current diagnosis information and any support they receive. Ask professionals and representatives of schools or other organizations that provide services about how long they plan to use an existing Asperger’s diagnosis and how and when they will reevaluate individuals (or ask that you have them reevaluated) based on the new diagnosis criteria.
2. Stay informed. Many national and local Asperger’s/autism organizations are keeping a close watch on this issue and will be valuable sources of information. Each group will have its own perspective on the DSM-5, ranging from concerned to neutral to optimistic. [See Appendix C for more information on these resources.]
3. Be prepared to advocate to make sure the new autism diagnosis is interpreted and applied appropriately. If you’re told your child doesn’t qualify for a diagnosis under the DSM-5 criteria, be ready to join with others to push to have that changed. While revising the specific wording of the new diagnosis may not be possible, you may be able to influence how the diagnosis is interpreted and applied by governmental, medical, or educational organizations. An organized effort by the Asperger’s/autism community could have enormous impact.
4. Be prepared to advocate for services. Even if your child is included in a diagnosis, you may have to work to ensure that the diagnosis entitles your child to the support he or she needs. Again, it will help to band together with parents in similar situations or work through established groups.
5. If you have to fight, fight nice. Because you’re not really fighting; you’re advocating to help others understand your position, to see what you see. If you can establish common ground with the person across the table, with whom you are working together to ensure that those on the autism spectrum get the support and services they need, you’re more likely to find solutions that work for everyone.
One important question is whether early intervention for children with Asperger’s, which includes parent training, will be easier or harder to obtain under the new criteria.
Some people with Asperger’s may fit under “social communication disorder” in the DSM-5. The manual is also adding “sensory sensitivity” to the autism spectrum criterion. This involves the extreme sensitivity to a person’s environment discussed in the chapter on hypersenses.
Facts and Figures About Autism
When you look at the statistics about autism spectrum disorders, it’s obvious that we need to direct resources to help deal with the issue. Let’s start with this eye-popping statistic: According to a March 2014 study by the Centers for Disease Control and Prevention (CDC), autism alone is the “fastest growing developmental disability, with a 1,148 percent growth rate.”
• One percent of the U.S. population of children between the ages of three and seventeen have an autism spectrum disorder.
• Prevalence is estimated at one in sixty-eight births.
• One million to 1.5 million Americans live with an autism spectrum disorder.
• Autism is the fastest-growing developmental disability: 1,148 percent growth rate.
• Ten to 17 percent annual growth.
• $60 billion annual cost.
• Sixty percent of costs are in adult services.
• Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
• In ten years, the annual cost will be between $200 billion and $400 billion.
• One percent of the U.K.’s adult population has an autism spectrum disorder.
• The cost of autism over the lifespan is $3.2 million per person.
• Only 56 percent of students with autism finish high school.
• The average per-pupil expenditure for educating a child with autism was estimated by SEEP to be over $18,000 in the 1999–2000 school year. This was nearly three times the expenditure for a typical regular-education student who did not receive special education services.
• The unemployment rate for people with disabilities was at 14 percent, compared with 9 percent for people without a disability. Additionally, during the same period, only 21 percent of all adults with disabilities participated in the labor force, compared with 69 percent of the population without disabilities.