Where do the behavior autistics go?

In this month of autism acceptance and autism belonging, I want to point to a very concerning issue. 

When your disability is TOO VISIBLE, you are made INVISIBLE by society, warehoused somewhere where you can be out of sight and out of mind of society. 

This is the plight of many adult autistic peer friends that I know. The adult autism world of inclusion and belonging, only wants the good patients. Special education had never wanted "behavior kids - the ones with meltdowns, aggression and SIBs", so will just house them in some classroom or NPS, ready to spit them out at age 22 at which point their legal obligation ends under IDEA. 

I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication.  I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood;  tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.  

The adult autism world does not want these "behavior autistics" either. Adult Day Programs (ironically meant for autistics) don't want them, even Group Homes for autistics want only the 'well-behaved' and easily manageable ones. 

Let me give you an example of 2 peers that I know -  one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.

Behavior therapy agencies will tell the family that that autistic is "not a good fit" for their program. If behavior therapy agencies don't want to help with behavior, then why is the  word "behavior" in their name at all. Autism professionals too will find PC alternatives that essentially say "not a good fit" for the autism they don't want to work with. 

Autism Clinics at major hospitals too, end at age 18. Did the autism and behaviors magic away in adulthood. 

Essentially the entire autism professional space is rending such autistics even more invisible. 

And doing such a fantastic job of it that the other autistics (invisible disabilities/neurodiverse) don't know or believe our existence.  

In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood. 

Are you really surprised at this. When you are out of sight is out of mind of society; it also means nothing need be done to help.  And it merits some societal attention only when it makes it to the news in a dramatic fashion such as in the article below which will be lost in the in the quicksand of short public memory. 

And did I mention, it is incredibly hard to even find support staff as there are enough "easier" adult-autistics clients job market. So staff don't want these autistics either; everyone wants the easy button. 

There is only waitlists or rejection at every turn. 

Where are the services and supports for these adult autistics? What is the long term outcome? What is the plan?

It does not have to be like this. I truly believe that there is a biological basis to all this SIB, aggression and other behaviors.  Where is the biomedical research that looks for answers  as to what's going on at a physiological level so that we can work on targeted solutions. Given that traditional pharma is not working, when are we going to get targeted interventions and pharma that actually work with autistic physiology?

How can there be inclusion and belonging for these autistics unless we find solutions to some prior steps first?

Why is this not seen as an urgent need in autism research? 

And to the growing numbers of Neurodiverse community out there, the action I request of you is -  Include everyone, including the marginalized autistics. Help find solutions to these issues so that every autistic can be part of the dream of Inclusion and Belonging. 

https://www.rgj.com/in-depth/news/2023/02/07/months-at-reno-hospital-young-man-with-autism-has-nowhere-else-to-go/69860556007/

 

Autism and Movement Disorders

There has been research exploring the link between autism and movement disorders, particularly with regards to motor coordination and control. Some examples

• A 2013 study found that autistic children had difficulties with motor planning and control, particularly in tasks that required them to plan and execute a sequence of movements.
• A 2011 study autistic children had more severe motor impairments also had more severe social communication deficits.
• A 2010 study looked found autistics had poorer motor coordination and control (as well as more difficulty with tasks that required fine motor skills, such as writing and drawing) ; compared to non-autistic controls (3).
• A 2003 study looked at prevalence and found autistics were more likely to have motor coordination difficulties than non-autistics, suggesting a potential link between autism and movement disorders.(4)
• A 2000 study found autistic children with autism had deficits in both motor control and executive function (compared to non-autistic controls), suggesting that the two may be related (5).

While such studies provide some evidence of a link between autism and movement disorders, more research is needed to fully understand the relationship and potential implications for diagnosis and treatment.

The Point: This is an area of need for answers and translatable solutions

Health Care Considerations

April is Autism Solutions Month. 

Some Healthcare Considerations

Autistic and other high-support disabled people often need full sedation to access procedures like regular dental care, yet such procedures are rarely covered by insurance—which means people aren't getting the care they need, says @HariSri108.

Another medical care consideration from @HariSri108 is that often autistic people cannot tolerate the sight of medical implements like syringes. Providers can take simple steps like covering implements with towels until they are actually used.

Kindness is the fuel that ignites the fire of hope

Small acts of kindness can make big differences in someone's life

 

Media Mention

April is Autism Solutions Month.

Thank you Eric for the kind words. 

The Ugly face of Ugly Laws

The Ugly Laws, also known as the unsightly beggar ordinances, were a series of laws that were enforced in the United States and other countries in the late 19th and early 20th centuries.

These laws criminalized people with disabilities, deformities, or any physical characteristic that was deemed "unsightly" or "disgusting" in public spaces.

The origins of the Ugly Laws can be traced back to the mid-19th century when cities began to grow rapidly, and industrialization led to an increase in poverty and homelessness. In response to these societal changes, city officials sought to regulate public spaces, including streets and sidewalks, and restrict the presence of certain groups of people, including disabled folks.

The first Ugly Law was enacted in San Francisco in 1867, and similar laws were subsequently passed in other cities, including Chicago, New York, and Denver.  

The punishment under the Ugly Laws varied depending on the specific city or state in which the law was enforced. However, common forms of punishment included fines, imprisonment, or forced institutionalization in a hospital or asylum.

So the disabled could be arrested simply for appearing in public spaces, including streets, sidewalks, and public buildings. In some cases, police officers or other authorities would use their own discretion in determining who should be arrested or fined, based on their personal biases or prejudices.The Ugly Laws were often enforced without regard for the civil rights or dignity of the disabled, and many people who were arrested or institutionalized under these laws experienced great hardship and abuse.

The Ugly Laws were justified under the guise of public health and safety, with proponents claiming that people with disabilities were a threat to public health and morality. However, the laws were also a means of social control and discrimination against the disabled, who were seen as undesirable and unworthy of inclusion in public life.

The Ugly Laws persisted until the mid-20th century, when disability rights activists began to challenge these discriminatory practices. Disability rights groups, including the League of the Physically Handicapped and the National Association of the Deaf, organized protests and legal challenges to the Ugly Laws, arguing that they violated the civil rights of the disabled.

The Ugly Laws were repealed at different times in different states and cities, and it's unclear which state was the last to repeal them. However, it's known that the Ugly Laws were still in effect in some cities as late as the 1970s.

For example, in Chicago, the Ugly Laws were repealed in 1974 after years of activism by disability rights advocates, including a high-profile protest in which activists chained themselves to buses to draw attention to the issue. In Omaha, Nebraska, the Ugly Law was repealed in 1974, after a lawsuit was filed on behalf of a man with cerebral palsy who was arrested for appearing in public.

In many cases, the repeal of the Ugly Laws was not the result of a single event or action but rather a gradual shift in attitudes towards the disabled and a growing recognition of their civil rights. Today, while the Ugly Laws are no longer enforced, people with disabilities continue to face discrimination and barriers to full participation in society. Disability rights advocates work to challenge ableism and promote greater inclusion and accessibility for all.

(Written Oct '21)

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Plain Language Version

The Ugly Laws: A Shameful Part of History

The Ugly Laws, also known as the "unsightly beggar ordinances," were laws in the United States and other countries during the late 1800s and early 1900s. These laws made it illegal for people with disabilities or any physical differences to be seen in public during the daytime.

Why They Were Made

In the mid-1800s, cities grew quickly, and there was more poverty and homelessness because of industrialization. City officials wanted to clean up the streets and decided to keep people with disabilities out of public spaces.

Where They Were Enforced

• First Law: The first Ugly Law was passed in San Francisco in 1867.
• Other Cities: Similar laws were made in places like Chicago, New York, and Denver.

What the Laws Did

These laws allowed the police to arrest, fine, or send to institutions people who were considered "unsightly" just for being in public places like streets and buildings. The decisions were often based on the personal biases of the officers.

Justifications and Reality

The Ugly Laws were said to be for public health and safety, but they were really about controlling and discriminating against people with disabilities. These laws treated disabled people as if they were a threat or unwanted in society.

End of the Ugly Laws

• Disability Rights Movement: In the mid-1900s, disability rights activists started fighting against these unfair laws.
• Protests and Legal Actions: Groups like the League of the Physically Handicapped and the National Association of the Deaf protested and challenged the laws in court.
• Repeal: The laws were repealed at different times in different places, but some were still in effect until the 1970s.

Examples of Repeal

• Chicago: Repealed in 1974 after protests, including activists chaining themselves to buses.
• Omaha, Nebraska: Repealed in 1974 after a lawsuit for a man with cerebral palsy who was arrested for being in public.

Ongoing Issues

Even though the Ugly Laws are no longer in place, people with disabilities still face discrimination today. Disability rights advocates continue to work for greater inclusion and accessibility for all.

References

Baynton, D. C. (2001). Disability and the justification of inequality in American history. In P. K. Longmore & L. Umansky (Eds.), The New Disability History: American Perspectives (pp. 33-57). New York: NYU Press.

Kudlick, C. (2003). Reflections on freaks. In M. Corker & T. Shakespeare (Eds.), Disability/Postmodernity: Embodying Disability Theory (pp. 33-47). London: Continuum.

McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York: NYU Press.

Norton, R. (2016). Ugly laws: Disability in public. New York: NYU Press.

"The 'Ugly Laws': When Being Disabled Was A Crime" (NPR, 2014): https://www.npr.org/2014/12/18/371437472/the-ugly-laws-when-being-disabled-was-a-crime

"Chicago's Ugly Laws Repealed: A Look Back" (Chicago Tribune, 2014): https://www.chicagotribune.com/news/ct-ugly-laws-chicago-history-flashback-20141020-story.html

"The Law That Made It Legal to Ban People With Disabilities From Restaurants" (Smithsonian Magazine, 2017): https://www.smithsonianmag.com/history/law-made-it-legal-ban-people-with-disabilities-restaurants-180962121/

Joy is the feeling of being alive in the present moment.

 

Contemplation, one line a Day. 

Be kind. It costs nothing and means everything

Curious Incident of Dog in Nightime

LASR lab outing today to see the Curious Incident of the Dog in Nighttime at TPAC. 

Protagonist is a Brit autistic teen. The first half was a little emotionally tense and bit upsetting, was almost going to leave during intermission. Second half led to good ending though. 

Lets critique Media Representation of Autism -  since the character is autistic

 

An optimistic mindset allows us to see challenges as opportunities for growth.

Kindness is the easiest currency to spread around

Not enough months to go around.

12 months are not enough to go around to acknowledge everything out there. 
I found out April is not just for Autism but also Poetry Month and also Community College Month.

Yeah for both the latter as well. 

Community Colleges are such wonderful places for autistics, offering college level course and college level expectations in a smaller, easier to handle environment. 

And I love poetry.