Serving a Neurodiverse Community with Discordant Views on Autism

A Brief Background on Autism Spectrum Disorders

by K. Yeates, May 3, 2015

Leo Kanner, a child psychiatrist a Johns Hopkins University, first used the term “autism” in 1943 to describe 11 children who displayed a set of similar symptoms: lack of social skills, unusual body movements, and rigid routines. Although some of the children were verbal, all had serous learning challenges and lacked social skills to utilize their speech to communicate well with others.

A year later, in 1944, Hans Asperger; an Austrian pediatrician first described patients with similar symptoms but with proficient language use and without serious learning impairments. Although Asperger syndrome was termed at roughly the same time as autism, it was not widely heard of in the United States in the early 1980s (Ozonoff, Dawson, & McPartland, 2002). The similarities between Asperger’s and autism were striking, but this led to divisive opinions as to whether they part of the same disorder. Asperger’s disorder was added to the DSM-IV (Links to an external site.) in 1994 under the umbrella term of pervasive developmental disorders (PDDs), characterized by impairments spanning all areas of functioning: social reciprocity, communication, and repetitive behaviors and interests (Young & Rodi, 2014). However, The DSM-5 released 2013, disposed of Aspergers and PDD-NOS and replaced those diagnoses with just one category, autism spectrum disorder (ASD) (Young & Rodi, 2014).

What makes these terms and diagnostic criteria relevant to our society is that they no longer apply to a small group of children, like Dr. Kanner first described. ASDs have quickly moved from being the subject of rare curiosity to becoming a mainstay in the areas of education, healthcare, insurance, and mental health policy. In 2000, the US Centers for Disease Control reported that 1 in 150 children had been diagnosed ASD. In just 10 years, the prevalence grew to 1 in 68 children (Centers for Disease Control and Prevention, 2015).

Even for people who don’t have an immediate family member with ASD, developmental disabilities have a wide reaching effect. ASDs affect all racial, ethnic, and socioeconomic groups. And the issues faced by those with autism affect far more than 1 in 68. Recent studies show roughly 1 in 6 children in the United States has some form of a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism (Centers for Disease Control and Prevention, 2015).

For policy makers or individuals who still doubt the relevance of autism, the economic cost on families and for society is undeniable. Individuals with ASD have higher medical costs on average and intensive behavioral interventions for children with ASD average $40,000 to $60,000 per child, per year. The estimated societal costs of caring for children with ASD were surpassed $9 billion in 2011 (Centers for Disease Control and Prevention, 2015).

The Discordant Realities of Living with Autism

The autism spectrum has widened to encompass a large range of characteristics. Those who represent this spectrum may be considered profoundly disabled or only affected to more mild degrees. Additionally, there are many adults who have an incredible range of unique talents that they claim are inextricably tied to their diagnosis of Asperger’s or autism. What used to appear as a rare, severe and one-dimensional disabling condition is now the purview of a diverse and discordant community.

This leads to many unanswered questions that face the future of funding for non-profits, educational services, progressive policy and advocacy. Where do we draw the line between viewing ASD as a gift, difference or disorder? How can we advocate for changes while respecting the diversity of the autism communities? Is it possible to advocate on behalf of specific policy changes or represent an autism group or organization without alienating another group of individuals who are affected by autism at a varying level?

In order to have a glimpse at the range of voices constitute the range of autism perspectives, I have chosen three short videos that show some common realities of life with autism:

• The first candid perspective from a young man with autism speaking on the problems inherent in much of the autism advocacy work that takes place without the input of autistics. The views he expresses are a growing concern among autism self-advocates and take specific issue with some prominent, national organizations.https://youtu.be/PWnd61C0SgA (Links to an external site.)
• This second clip shows the perspective is primarily from a mother, but also shows the whole family of a young teen with autism and how his disability affects daily life. https://youtu.be/w_23z9yJAq0 (Links to an external site.)
• Lastly, this short clip shows a young, female children in the throws of a severe meltdown that left her parents feeling they had no other option to seek help at a hospital emergency room. Although the child doesn’t seem to be communicating in a typical sense, this is likely her best method of communication in this situation.https://youtu.be/-4drTQsSLXg (Links to an external site.)

Current Trends and their Divisive Forces

Rates of autism and the demand for services show no sign of slowing down, which could lead many policy-makers to question the work of the scientific researchers who receive grants from non-profits, the same nonprofits who are already under fire for spending funds on scientific research to investigate autism. Many self-proclaimed autistics see this work as a move to eliminate" or eradicate the core of their identity and therefore undermine their humanity. Conversely, the opportunity of Increase Demand certainly exists. This challenge that faces the services and non-profits working with autism are “The legitimacy and effectiveness challenges” (Salamon, 2012).

Also facing scrutiny for its legitimacy and efficiency. Increasingly stakeholders are asking: what are these large non-profit autism organizations accomplishing and are they even employing people with autism within their organization?

Philosopher Paulo Freire speaks on the extensively on representing groups who are marginalized or oppressed, but he stresses—like the young self-advocate in the first video—the importance of including the views and voices of those with autism, not just well intentioned politicians, parents or allies. Freire states, “One cannot expect positive results from an educational or political action program which fails to respect the particular view of the world held by the people” (Freire, 2000).

Finally, I believe that there is some hope and accord offered by author and autism self-advocate John Elder Robison in his address to Autism Social, Legal, and Ethical Research Special Interest Group (Links to an external site.) at the 2014 International Meeting for Autism Research (IMFAR):

“I don’t believe the question is ‘who’s going to speak for them.’ I believe the question is, ‘when are we going to develop science to let them speak themselves?’ Everyone who lives with autism experiences suffering. You look at me and I look articulate, but I suffer, in some way, every single day. I think that the duty of scientists is to develop tools in this context to relieve and remediate discomfort and suffering. It is NOT to develop something that is called “a cure,” which has the ring of getting rid of us. If we can focus on relieving suffering and maximizing capability, and when we open up a dialogue and recognize that autistic people stand with other significant recognized minorities in America, then we can begin to talk about changing society” (Robinson, 2014).

I believe that both Freire and Robinson share a very crucial idea. We need to enable for all within a community. This dialogue is imperative for the formation of meaningful programs and for successful policy-making. Perhaps we should start by truly listening.

References

Centers for Disease Control and Prevention. ( 2015, February 26). Autism Spectrum Disorder (ASD). Retrieved May 3, 2015, from Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/autism/data.html

Freire, P. (2000). Pedagogy of the Oppressed. New York , NY: Bloomsbury Academic.

Ozonoff, S., Dawson, G., & McPartland, J. (2002). A parent's guide to Asperger syndrome and high-functioning autism. New York, NY: The Guilford Press.

Robinson, J. E. (2014, May 23). John Robison at IMFAR: On Autism Rights, Ethics, & Priorities. Retrieved May 3, 2015, from Thinking Person's Guide to Autism: http://www.thinkingautismguide.com/2014/05/john-robison-at-imfar-on-autism-rights.html?m=1

Salamon, L. M. (2012). The Resilient Sector: The Future of Nonprofit America. Washington D.C.: Brookings Institution Press.

Young, R. L., & Rodi, M. L. (2014). Redefining autism spectrum disorder using DSM-5: The implications of the proposed DSM-5 criteria for autism spectrum disorders. Journal of Autism and Developmental Disorders , 44.4, 758-765.

Let's Rethink Truancy Rather than Compounding the Issue

I don't even own a cat so I can't just, like, take a cute cat photo and post that a blog for y'all. Instead I've got an article and a diatribe on truancy policy. ‪#‎longreads‬:
I'm so frustrated by educators and politicians "cracking down" on truancy. There is already so little flexibility in our public school systems and the approach by our AG's office, and many other legislators is to be tough on this issue like any other crime without addressing any of the actual issues underlying the fundamental problems.

Truancy is not an issue of simple attendance or always caused by a commitment to education on a parents' part. And it makes no sense to penalize parents in areas where there are no transportation services or accommodations. Our local elementary school sends us letters constantly about the importance of "showing up", never actually giving us concrete ideas or encouragement to engage in our children's education. My child also can only be allowed to stay home sick from school if she has a fever or is vomiting. Nothing less is sufficient so we're forced to send them to school not feeling well or get exposed to viruses unnecessarily.

While my child is 6 and therefore legally required to attend school, her education is more than the three hours in the kindergarten classrooms each day. We have other entire programs built into her schedule and she works hard year round at a huge array of goals to augment the classroom setting. Sometimes what is best for her is to have a few days break at a time that's been difficult for her and our developmental pediatrician has recommended reducing demands. We also have gotten calls from her school warning that there have been multiple cases of confirmed whopping cough on her campus, (seems like maybe kids could be kept home when having those infectious symptoms, not just the fever/vomiting criteria). Yet our school district superintendent keeps mailing the same pointless letters on showing up and not missing even ONE hour of school. It's rude, ineffective, punitive and totally misses the point.
Regarding the article below: Obviously, I'm not a resident of Illinois but I find the idea of parents being fined or jailed for truancy to be disgraceful and the proposal to double the punishment for parents of children utilizing special education to be discriminatory (so obviously, the way we can just glance at Indiana's new law and know deep down that's wrong).

Why can't lawmakers and school districts work with families to make sure there is enough done to meet needs of families who struggle to make it to school? Perhaps we needs built in sick time and a longer school year or floating "family days"? Maybe some families are missing school they don't have reliable transportation, perhaps they've got unaddressed behavior or learning issues or maybe their child has a disability or diagnosis not understandable to these administrators and they can listen and work to find a new service, modification or accommodation so the child can access education better.

http://www.disabilityscoop.com/2015/03/30/lawmakers-truancy-penalties/20169/

Lawmakers Call For Tougher Truancy Penalties For Special Ed

Stiffer penalties could soon be in store for parents in one state whose children skip school, but the harsher punishment would only apply to those with kids in special...

DISABILITYSCOOP.COM

Why I'm supporting the Lanterman Coalition, My open letter to the Senate Budget Committee

Attn: Senator Ellen Corbett (Chair), Senator Bill Monning and Senator Mimi Walters,

I’m writing as a parent of a child with a developmental disability to urge you to adopt the budget recommendations of the Lanterman Coalition. The consensus of these 17 diverse organizations is clear in demonstrating that California’s budget decisions have undermined the state’s responsibility to provide sufficient support and services to people with developmental disabilities. Not only have these budget changes eroded the Lanterman Act, they’ve compromised the safety, health and future opportunities for vulnerable Californians and diminished the quality of living for the families represented by these each of these individuals and budget allocations.

As a parent of a child with autism, and as a Regional Center consumer, I can personally attest to the importance of these budget issues. I implore you to please restore funding to the Early Start Program and to encourage families to keep private health insurance coverage by funding insurance co-pays and deductibles for therapies like Applied Behavioral Analysis (ABA).

- Restore Early Start Program funding that was cut in 2009 -

When my daughter was 14 months old, I told her pediatrician I was concerned she couldn’t hear me when I called her name. By 18 months, I reported that I was no longer hearing the few words she had previously uttered. While my daughter’s skills were regressing she was also facing new health challenges. As parents we spent all of our time working to feed her, help her sleep, and keep liquids down, while simultaneously appealing our insurance company for services like speech therapy. With all of the providers we had reached out to for help, no one had ever mentioned available services through Alta Regional or the Early Start Program. We didn’t receive information or a referral until my daughter had already turned three and had nearly stopped talking and eating altogether.

I believe my daughter could have made more progress and received more support if there was more education and outreach on Early Start services. Because children like mine can have regression and show symptoms of serious disabilities at different times, it makes sense to provide early intervention without the new requirements for to have more significant delays across a large number of domains in order to be eligible for services. Many parents I’ve talked to are being told to wait until their child falls behind even further because they have deficits that are just under the current threshold. By cutting these services, and the statewide outreach to make these services accessible, children like my daughter are missing out on a critical window for early intervention. It doesn’t make sense fiscally to compromise services that will have long-term benefit for a child’s outcome and level of functioning and independence.

- Support Regional Center Funding for Insurance Co-Pays and Deductibles -

The budget trailer bill language that has prohibited regional center funding for insurance co-pays and deductibles has been devastating for families like mine. Instead of prioritizing treatment, families like mine are forced to weigh the long-term benefits and risks of keeping our kids covered by our private insurance or by dropping insurance covered in order to afford ABA therapy. California has saved an estimated $200 million per year with the mandated coverage from SB 946, however, the costs of paying for co-pays and deductibles are very small when compared to the entire cost of an ABA program, nearly 20% of regional center families have reported dropping their children from their private insurance plans because of the hardship posed by deductible and co-pays. The state should be encouraging families to retain and utilize private health insurance as a source of support for a child with disabilities. Penalizing Regional Center consumers who carry insurance is not a fiscally responsible policy. 

It’s difficult to express just how important ABA therapy has been for my child and our family. It has been an enormous investment in our time and we’ve changed employment, relocated, and altered nearly every aspect of our lives in order to provide her with the services and support needed. ABA therapy has tapped my daughter’s potential and brought joy back into our household. Our child is now able to communicate with us, play safely with her younger sister, and she’s developing self-help skills. I believe that the upfront costs required to promote and provide effective therapy will pay dividends in the long run. 

I am counting on your support to make these budget recommendations a reality for the individuals and families, like mine. 
Thank you,

Kirsten Yeates
Parent of a child with autism

Senate Budget and Fiscal Review Committee, Subcommittee No. 3 on Health and Human Service

Part A Hearing Agenda on Health including Developmental Services