Typically when we speak of autism or people on the spectrum, we try to put them in the best light possible. Research studies are often related to neuro development and differences between neurotypical peers and our neurodiverse brothers and sisters. We fight for their equality, to be free from stigma, bullying, and their right to work amongst their neurotypical peers in every field of work you could possibly think of. We shine the brightest lights on their accomplishments and celebrate progress whenever a possible breakthrough has been made in the field neurosciences. As we should. The great individuals on any part of the spectrum, have contributed to society in ways that haven’t even been recognized by the media or in the most in depth research papers you can find anywhere on the internet.
However, there is another side to autism that isn’t spoken of as much either and any research or meaningful conversation related to it is just as scarce.
What I’m referring to is Oppositional Defiance Disorder (ODD) and the high ly controversial, Pathological Demand Avoidance syndrome (PDA). It is important to note that Pathological Demand Avoidance syndrome is NOT recognized in the DSM-5 or the ICD-10 and is being compared to Oppositional Defiance Disorder and considered by many medical professionals to be one in the same. This particular debate will be covered in PART 2 of this article and for the sake of convenience and simplification, I will be referring to Oppositional Defiance Disorder from this point forward.
Recently, in September of this already chaotic year, Linden Cameron, a 13 year old autistic boy living in Salt Lake City, Utah, was shot by police who were responding to a domestic disturbance call made by his mother requesting help for a mental health crisis. Police had made a statement saying Cameron “had made some threats to some folks with a weapon”. And were responding to a “violent psych issue”. When Cameron wouldn’t cooperate with the police and began to run from them, he was shot. The mother of Linden Cameron argued, not in so many words, that the police could have handle the situation better. This is an extreme case and a blatant use of excessive force was used. However, this particular case is important to the topic nonetheless.
Then, in October of this year, a 9 year old autistic girl living in Australia was put into handcuffs and taken away by police after having an apparent meltdown at school. According to police, they have been called to her school more than once to detain her and have her sectioned under the Mental Health Act. Fortunately, in this incident, nobody was shot.
Point being in presenting these examples is that there is a darker side of autism that needs to be addressed.
When we see incidents like the examples I’ve shown, the public is outraged and rightfully so. But parents of autistic children and adults as well understand the need for people to understand that our autistic brothers and sisters can come with issues that are less than pleasant that we still don’t understand and requires patience and education on both sides of these issues.
Law enforcement in particular, needs to be better educated on how ODD works and how to deal with people on the spectrum who have outbursts and meltdowns. However, parents with children on the spectrum and people who do not avoid the reality of situations that law enforcement officers are dealing with and have no other choice but to detain and perhaps take certain individuals into mental health facilities.
No one likes the idea of having someone with a “disability” taken into custody and being placed in handcuffs. But when an individual is acting disorderly and refuses to a request to calm down what are the other options?
There are some schools that are beginning to recognize the reality of autistic children having meltdowns and outbursts. They provide rooms for these children to calm down in a safe environment without being detained and allow them to work out their meltdowns in a better suited environment. This is a great start and other schools and educational facilities would be well to do by following these ideas.
Another option, and a very controversial topic among the autistic community, is medication. Sedatives in particular, and mood stabilizers are presented as an option by psychiatrists to parents to help combat outbursts and hyperactivity disorders.
Parents such as myself and others tend to avoid these options solely on the basis of side effects of these medications alone. Lethargic and zombie like behavior is hard and sometimes unacceptable for a parent to watch. Moreover, the individual taking these types of medications shouldn’t be forced to feel this way and refuse to take them.
So what’s left?
There are few options at this this point in dealing with meltdowns and outbursts. Education and listening to people with autism cannot be stressed enough. People with higher functional capabilities who are on the spectrum understand better than anyone what a person that is having a meltdown is going through.
There are extremely talented and highly intelligent people on the spectrum researching autism and should not be dismissed. Moreover, there are qualified neuroscientists and psychologists on the spectrum as well who need to be listened to and their work followed up by their peers to come up with better solutions to problems that come with ASD that are not so pleasant.
Furthermore, discussions and healthy debates should not be avoided any longer as this could potentially escalate into a bigger problem if not tackled now.
In part 2 of this piece, I will discuss ODD in a more detailed fashion and address the highly controversial and very often dismissed theory of Pathological Demand Avoidance syndrome (PDA).
For now, I would like the reader to contemplate and discuss with loved ones, the idea of addressing meltdowns and outbursts in a better way.
Can we come up with better options? Can we provide better information and education to law enforcement and people who interact with our children and loved ones on the spectrum? And can we provide assistance to the scientific community to further the studies of ASD and the more somber side of the spectrum?
I believe we can
I have been waiting on peer reviewed data from studies conducted by a few scientists dedicated to autism research and have been getting a bit restless waiting on these reports I’ve requested. So, I will briefly start this venture with a few personal thoughts about people with autism and the extraordinary contributions they have made in different areas in the scientific world including research in autism of course, but a wide range of studies which should also include the search for extraterrestrial intelligence, astrophysics, astrobiology, and anything related to space exploration and/or technology.
But Mr. Riddles? Aren’t there already autistic people in these fields of study already?
Yes, but not as nearly enough as there should be!
Now turn your attention to a few quotes I picked up from a few articles I’ve read to give you an idea why. And after that, I will begin to make my case why these reasons are ridiculous and hopefully in the next few days coming I will have the hard data I’ve been looking for and show you.
First, here’s a paragraph taken from an article I posted a couple days ago:
Then this one I found a but upsetting:
These autistic scientists hope they will eventually become a major force in autism research. But obstacles to their academic success abound, from sensory overload at conferences to difficulties communicating with colleagues. Researchers may dismiss autistic scientists as ‘too autistic’ to produce quality science or, conversely, ‘not autistic enough’ for their insights to be useful.
Too autistic? Not autistic enough?
Sounds like a copout to me. But a couple of positive words to end the first part of this blog:
Mottron wrote in a 2011 Nature commentary that Dawson had “helped the research team question many of our assumptions about autism — including that it is a problem to be solved.” As a result, Mottron has come to view autism as a natural variant within the human species, rather than “an error of nature that should be corrected.”
“For every high-quality piece of work an autistic researcher puts out on autism, the more the autistic perspective will be valued or recognized.”
Obviously there is a hell of a lot more to be done to give people with autism a fighting chance at success. And, It’s gonna be a slow process but worth the effort to give these champions a name in history.
And yes, there is a bigger and more detailed message I’m leading to as I get the reports I’ve requested. But I was just itching to start somewhere and when I finally get this all put together, I can rewrite it all over again and present it to a specific audience.
I’ll post a link to another article below I found particularly interesting.
Posted on October 5, 2020
So I’m hearing a lot of debate going on in certain autism awareness groups lately about the search for a “cure ” for people on the spectrum.
Points have been made about certain individuals on the spectrum not wanting to be “cured” and are frustrated with people stigmatizing them as “disabled” or less of an individual.
I most certainly respect that perspective as I am not on the spectrum myself. And my son, being on the spectrum, has never expressed any concern for a so-called cure as well.
However, one should consider the perspective of other individuals on the spectrum who do express a desire for a “cure”.
These particular individuals who are concerned with finding a “cure” have expressed feelings of being uncomfortable in their own skin.
Not just for reasons that we should be fighting to eliminate in our communities such as intolerance, ridicule, abandonment and everything in between, but also for reasons those who are not on the spectrum are not aware of or cannot fully understand.
Some of these reasons include:
Be sure to check out MIchael Beavers exclusive interview with Jim Penniston as they talk about the famous Rendlesham Forest incident!!