You may have noticed something different about us: after eight years, we have renamed our website Petro-autism.com. Why the change from “Asperger Miracles”?
That is actually a very complicated question. The “Miracles” component often led to misconceptions in those who didn’t read our book and was an easy choice to eliminate. The “Asperger” component, on the other hand, is controversial, and I live both sides of the debate. That change was not purely academic; it was deep-seated, emotional, and a difficult decision to come to. The short answer to the question posed above is that my co-author son, David, and I are updating to current industry changes. But the rationale requires a stroll through autism’s recent history—as well as our own.
This same rationale motivated the recent revision of the first two chapters of our 2nd edition book. And providing some excerpts from said revision is probably the best way to explain how perspectives about autism are evolving. The following passages, written by me, can be found in the latest edition of Expect a Miracle: Understanding and Living with Autism:
“[Autism] has undergone evolution and controversy throughout David’s lifetime. When Asperger’s Disorder became a diagnosis in the DSM-IV™ in 1994, David was one year old. At that time, Asperger’s was consistently considered an autism spectrum disorder, but disagreement surrounded whether it existed on the less severe end of the autism continuum or as a divergent subset with unique qualities unto itself. Then, in May of 2013, the classification was revised by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (commonly referred to as the DSM-5™). In this updated version, the “diagnosis” of Asperger’s Disorder was eliminated from the “neurodevelopmental disorders,” and it was replaced by the broader diagnosis of autism spectrum disorder, abbreviated ASD (DSM-5™ 31-32, 51).
But David was 20 years old at that time, and Asperger’s was the designation he grew up with and incorporated into his identity! The DSM-5™ rocked our world. It took time for us to adjust and embrace all that it altered. Though David’s diagnosis changed, the term Asperger’s was still meaningful to us, and we often continued to use it as a description, if not his label. I suspect the same holds true for many others diagnosed under the DSM-IV™ era” (10-11).
The term “Asperger’s” means something different to us than it does to many others. It’s all about perspective and identity, and it’s personal. But if a revision of terms affords services to those who formerly didn’t appear in need, then it is worth it. If assumptions of rank, ability, or ableism are re-envisioned, all the better. For the past decade, David and I have been part of the movement to eradicate stereotyped thinking of autism, so we thus wholeheartedly concur with recent modifications depicting autism, despite the associated phasing out of the term Asperger’s:
“Currently, various models are further reframing how autism is viewed. The long-held concept of autism on a linear continuum (with “less” on one end and “more” on the other) is being rejected. Instead, better schemata [see trimmed sample below] are emerging that represent each autistic person’s varying and dynamic functioning within each aspect of autism i.e., skilled in some areas, but requiring varied support in others. Prevention of pigeonholing people on a line may help change stereotyped thinking and allow greater access to support services for all—even if one ‘doesn’t seem to have autism’. It will also hopefully prevent assumptions of inability based on one characteristic, such as being nonverbal” (11).
“Autism pervasively affects life and functioning. It cannot be summarized by degree. One cannot be “a little autistic,” just as one cannot be “a little pregnant”…you are, or you are not. Thus, terms like high functioning and low functioning are outdated and misrepresent reality. The term Asperger’s is also being scrutinized because it implies a ‘high functioning’ status” (11).
David and I have evolved in our perspectives and understand the greater population’s views. Furthermore, we agree with the underlying rationale for WHY the term Asperger’s is now considered objectionable—at least in the US. We respect each autistic person’s uniqueness and concur that terms such as high functioning and low functioning are damaging due to missing both needs and strengths. Thus, updating with the philosophies, we have revised our website name and terminology. But I still respect the term Asperger’s for those who identify with their diagnosed subculture—as long as “degree of functioning” is not part of that mindset.
I believe that the world, autistic as well as neurotypical, must respect how people identify with referencing their autism, just as we are gaining in sensitivity to people’s gender identification. The key to both is that people do not want to be stereotyped in any facet of life. Seeking to learn about each other without assumptions would go far in our understanding of each person’s true self and abilities.
To that end, it is our hope that our recent changes contribute to prevention of comparisons in the autistic community.