“Conoco…Sunoco…. BP…… Getty….”
“Here, Marcus. Take this cup of spaghetti sauce and pour it into the pot,” I directed.
Marcus stopped swaying and carefully took the cup from my hand and slowly poured it into the pot as directed. He guided the cup back to me, gave a wild shake and continued.
“Amoco…..Texaco….Gulf….,” Marcus continued.
“Great job! Okay, here is the spoon. Stir the sauce in the pot.”
Marcus took the spoon and focused on stirring the pot of sauce. After one full stir he whipped the spoon out of the sauce and handed it back to me.
And continued naming gas stations.
When I graduated from college in the nineties I got a job as a Residential Counselor (RC). I happened to graduate from college the same time that state hospitals were closing due to the push for deinstitutionalization. This was the process of removing individuals from long-stay psychiatric hospitals to residential facilities with community mental health services.
There were 3 men, in their forties and fifties, that lived in the residential facility where I was employed. They had been in an institution for most of their lives up to that point. I was assigned to work with Marcus as his RC. I was to help Marcus learn skills to live outside of an institution and become more independent.
Marcus was an individual living with Schizophrenia and Pervasive Developmental Disorder-NOS.
I thought about Marcus recently when I was reading this article from Scientific American discussing the reason why autism rates have been on such a rise. The article states two main reasons: Increased awareness and changes in the diagnostic criteria.
Here is one excerpt:
Has the rising awareness of autism contributed to the prevalence?
Increased awareness of autism has undoubtedly contributed to its rise in prevalence, Durkin says.
Until the 1980s, many people with autism were institutionalized, rendering them effectively invisible. Studies show that parents who are aware of autism’s presentation—by living near someone with the condition, for example—are more likely to seek a diagnosis for their children than parents with no knowledge of the condition.
I went searching for autism prevalence rates through the years and collected this data found here:
In the 1980s, autism had a prevalence of about 2–5 per 10,000 people
In the 1990s prevalence: 18.7 per 10,000 people
Now the prevalence of autism is 1 in 68
I went searching for more information about the changes in the diagnostic criteria and found this report:
Firstly, the DSM-IV defined ASD as a Pervasive Developmental Disorder with impairments in three domains. The DSM-V has collapsed them into two domains.
….the new criteria was created only to narrow down the diagnosis under one umbrella of Autism Spectrum Disorders
In addition to the single diagnosis the DSM-V now has included sensory impairments….. It is believed that this will make the new criteria more sensitive in identifying the complex ASD cases and even identifying more females, who are believed to have more sensory issues than males.
The new criteria was feared to reduce the ASD prevalence rate, however, the recent estimates suggest the opposite. Whether this is because of the new criteria being more sensitive in diagnosing the less severe ASD individuals, more females and children at a younger age, is still not clearly understood.
Through the years there has been more awareness give to autism and many changes in the diagnostic criteria. Autism prevalence is on the rise.
For Marcus, I am happy that state hospitals closed. I enjoyed my time with him and still dance to some of his favorite songs the same way I danced with him to those songs. With a clap and a stomp. I have seen him in the community – and think how wonderful for him to be in the world and not in an institution. For my time with Marcus, he was very happy. And that made me happy.
In my family, I am happy that there is more awareness of autism and changes to the diagnostic criteria were made. It allowed for Declan to be diagnosed at a young age. The new awareness and criteria helped Catelyn to be identified as a person on the spectrum.
Why was that so important? Because my kids were able to gain access to services right away. They are supported in their areas of need. They are happy!
I came across this article as well through my reading. The individuals in the article grew up with undiagnosed autism. The individuals as children felt they were different, and some were even blamed for not fitting in and being “weird” by adults. I read this article and feel like Cate would have fallen into this situation if things were different. Check it out if you get a chance!
A LOST GENERATION: GROWING UP WITH AUTISM BEFORE THE “EPIDEMIC”
I do think increased awareness is why there are more people being diagnosed, especially girls and adults. Now, we need more supports. Our kiddos are getting better support but autism doesn’t end at adulthood. And all the adults that received their diagnosis in adulthood should have more access to services.
I think a lot of us can look back on our school days and remember someone who was probably autistic but at the time was just considered weird.
Yes, I agree. I thought about that and had asked Catelyn’s therapist in passing waht would happen to Declan once his services ended with the school, and she said he could always start to see a therapist or that they had social groups he could attend as a young adult/adult. I gave her a quizzical look – I don’t know if either of those options really fit him. Hopefully as more people are being diangosed and in need of supportive services, the demand will be met.
My grandparents (deceased) used to have an autistic boy living in the house next to them. Friendly child (one of his problems) would do anything you asked him to do if you just demonstrated the action for him. Grandpa taught him how to wash off the lawn chairs using a hose. Grandpa’s chairs were plastic. The kid’s parent’s chairs were cloth. So the parents had to get their chairs to dry back off. Minor inconvenience.
Grandpa repainted the picnic table at their house early one Sunday morning. Grandpa went back inside to get a cup of coffee. He came back out to find the autistic boy sitting on the wet paint of the table. About that time the boy mother came out of the house to get him to leave for church. Grandpa let his mother know the kid needed to get a change of pants on, unless they were wanting to damage the churches facilities with wet paint. The little boy ended up being institutionalized because his mother could not keep up with him constantly.
Your Grandpa sounds like he was a very nice man. Here is hoping the little boy has found happiness as a grown man.
I think my life would have been very different if autism had been “around” in the 70’s.
I know what you mean – mine too!
I do think some of the increase of diagnoses of Autism are due to environmental factors that actually increase the rate of neurological damage in the population, things such as aluminum additives to jet fuel that is sprayed out over everyone, more food being exposed to aluminum-lined containers, aluminum foil wraps and aluminum cookware, and an increasing number of vaccines being given which contain aluminum.
I think there is something else out there as well. In my mind it has a lot to do with GMO’s and what chemicals are put on crops.
Yes, I am sure those things are detrimental to the health of all of us, and to those with special needs possibly even more.
Wonderful post Robyn. I my childhood, children and adults who showed behavioural characteristics, now termed ‘autism’, were just labelled as being mentally unstable and virtually uneducationable. I am glad greater understanding and awareness has changed this.
Thank you, Kim! I am glad too
Interesting post. Growing up with undiagnosed Tourettes definitely put me at a disadvantage (weird adult syndrome). Seeing the sort of support my nephew (also has Tourettes) gets shows me how things could have been different. The general increased awareness health related issues has been dramatic. It will be interesting to see where it goes in 20-40 years.
Thank you! That is an interesting perspective you have to witness your nephew with Tourettes be diagnosed and supported at such a younger age. I agree – the increase in awareness for health related issues will continue to grow and it will be interesting to see what happens.
Hey, hope you are doing well.
I invite you to read a post of mine where I am gathering links of warriors facing mental health challenges 1st hand to educate people, to raise awareness and acceptance.
I need help from you in fighting stigma.
Here is the link to post..
https://stoneronarollercoaster.wordpress.com/2018/04/27/mental-health-awareness/
Your participation can change life of someone.
Thank you 🙂