By Jake Crosby
“A "Refrigerator Mother" Adult with Autism Speaks Out,” read the title of one post from an autistic perspective, which was actually “more of a cry for help than anything else,” according to the post itself. To anyone reading the post, however, it is clear that “a cry for help” is by no means an understatement. The post, written as a letter, is filled with horrendous health problems few can fathom. Perhaps what stood out most to me was “nearly dying of acute heart failure in my 20s.”
There is no doubt much anger in what is written - at the doctors who were no help, at the psychologists who would blame the parents, and more recently at the Neurodiversity proponents who are using their ASD diagnoses to attempt to speak for everyone with an ASD diagnosis. Most of the NDs just have Asperger Syndrome, which would seem comparably trivial to others who either have or are parents of those with more severe ASD-related problems
The NDs advocate against a cure, only see society’s reaction to autism as a problem and not the condition itself, and often try to prevent people on the spectrum from getting help. Deborah Delp, a mother of a child with autism and the very first person to comment on my first article put it this way “As a parent of a non-verbal 11 year old son (yesterday was his birthday), I have wondered if he is happy and whether or not he wants us to heal him…And still I wonder if he would prefer something other than what has been provided for him. After reading your piece, I will wonder a little less.” Ms. Delp is one of many parents just trying to do what they see is right for their autistic children, but is under constant pressure from NDs not to. This has prompted many to lash out at them.
Unfortunately, some of the backlash against the NDs has not just been directed at those who deserve it. People with Asperger Syndrome are now getting their disabilities trivialized from both the NDs and some of their opponents. Reading this post saying we are not “truly disabled” is not the first time I’ve heard such sentiment expressed. Still, not all of us subscribe to Neurodiversity.
One can also learn from the internet that people with Asperger Syndrome not only suffer from the standard symptoms which are disabling enough, but also from life-threatening conditions, which are often written off as co-morbid and having nothing to do with autism.
Michael Thomas, a teenager with Asperger Syndrome and Bowel Disease, is one such example. He was one of the 12 subjects in Andrew Wakefield’s case study published in The Lancet in 1998. His physical problems are horrendous; he described himself as being in “constant pain.” His mother’s story in “Selective Hearing: Brian Deer and The GMC” went into further detail about her son’s nightmare. He suffered “attacks,” during which he tested positive for Measles “in high levels.” At one point she spoke of having to rush him to the emergency room, where doctors and nurses “literally” had to save his life. The doctor turned to her and said, “Mrs. Thomas, we are treating the emergency only.”
Michael suffers from life-threatening physical problems, he has been denied help from doctors and often has to deal with his autism-related physical conditions being ignored. Unfortunately, NDs are more likely to be associated with Asperger Syndrome than people like Michael are. This is probably due to Neurodiversity’s activity on the blogosphere and the disproportionate coverage it gets from mainstream media over other autistic people.
Perhaps that is the reason for one particular comment I read, saying, “It is usually only those with Asperger's who are higher functioning, who are cold and unaffectionate. The more disabled you are, the further away from this you get.”
Statements such as these, although hurtful, were undoubtedly influenced by the un-relenting nastiness of Neurodiversity supporters. While words like “cold and unaffectionate” may apply to some NDs, as I have been on the receiving end of some of their meanness, such words do not apply to people with Asperger Syndrome. The wrongdoings of a few within this group do not implicate the group itself. The fact that NDs include a lot of people with Asperger Syndrome does not mean everyone with Asperger Syndrome is an ND, and does not mean that everyone with Aspergers should have to pay for what a few claiming to speak for them are doing.
Jonathan Mitchell, autistic adult from California and author of a blog I frequently read agreed with me, saying, “I agree that Asperger's and very mild ASD's can often be disabilities and should never be trivialized.” Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.
Jake Crosby is a history student with Asperger Syndrome at Brandeis University, and a Contributing Editor to Age of Autism.