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Advocating for Those with Autism: It’s Time To Be Politically Incorrect

Say whatBy Geoff Dubrowsky

Every time I begin this article I am delayed by the latest birth of a politically correct term.

While celebrating this weeks birth of the word “thug” I decided I better get this thing done! The media clearly facilitates this debate on the English language for ratings! The world of disability advocacy however has turned it into an opportunity to change the narrative of helping our most severely cognitively impaired loved ones.

This does not mean I am against the removal of hurtful labels. It just means, I am against them being replaced with other yet to be identified disparaging labels. I am very concerned that by removing these labels we have moved our loved ones outside the scope of the very laws that protect them. Mentally Retarded has become Intellectually Disabled, a term found nowhere in the Developmental Disabilities Act or the ADA. Intellectually Disabled, is actually a term many use to describe their brother-n-law as my wife’s brothers do! I make light of this not because I do not fear the obvious changes, but I do fear the other changes and redefinitions that have occurred under the radar.

Words such as “choice,” “inclusion,” “integration” and “community,” have been conveniently redefined to mean only certain choices or certain places according to the user’s ideology. My own fear builds when the user’s ideology is based in profitability. In these instances, individuals with disabilities have suffered due to a lack of individualized care. The families and caretakers are also suffering from a deterioration of options. Options for living, options for care, options for vocational advancement and options for safety. Service providers across the Country and US Government agencies are interpreting language without considering societies most vulnerable population. Individuals that are afflicted with Fragile X, Severe Autism, Mental Retardation and other developmental disabilities affecting a person so severely that they cannot speak, use a bathroom, feed themselves, understand danger or express pain. People whom when faced with change or pain cannot express themselves in any other way than a violent outburst that endangers themselves or others.

Our main fear should be misrepresentation of the law, by groups and individuals claiming to support and protect the developmentally disabled. Praying on parent’s own fears with long wait lists created by removing options. Nowhere in the ADA, in the Supreme Court’s Olmstead decision, or in the Developmental Disabilities Act is there a mandate to close all “institutions.” These laws encourage community integration where possible, but leave the final decision to individuals and their families.

The Supreme Court in Olmsted goes further, requiring individual choice and emphasizing that “nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

As a member of the New Jersey Council on Developmental Disabilities, I am thrust into this den of potential wasted! We are supposed to empower of people to become self-advocates, but what we do is educate them to advocate not for their own needs, but for what they are told others need. We let them down by using them to support a narrative, which helps the support organizations get rich!

I fully support for an array of service options, based on individual choice and need. I would love to live in a fantasy world where everyone could live alongside everyone else in a regular neighborhood, enjoying community to the fullest. Living in a regular neighborhood is a nice image, but what’s regular? Some of us live in homes in the suburbs or in the hearts of cities; oth- ers live in condominiums, apartment complexes or college dormitories; and others choose to live in retirement or gated communities. Like all of us, people with intellectual and developmental disabilities will choose and need different living arrangements. They should not be relegated to someone else’s notion of what is “regular.”

As a parent or guardian Never allow others to limit your loved one’s options in an effort to be politically correct!

Geoffrey Dubrowsky. MBA is a member of the New Jersey Council on Developmental Disabilities, Vice President of the Board of Extreme Sports Camp for Autistic Individuals and Executive Board member of VOR.

A professional video producer, with credits including, the Republican National Convention broadcast and Dr. Stanley Greenspan's Floortime series, Geoffrey and his wife are parent of an 18-year-old boy with severe autism. Uncle and guardian of two developmentally disabled young adults on various ends of the disability spectrum.  Also, past Pres. of the New Jersey Chapter of Cure Autism Now, past vice president of and NYAC New York families of autistic children ,and past Director of Development for POAC Parents of Autistic Children.

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Potatoe, Potato. Tomatoe, Tomato. Labels, Labels, Labels.

Our kids still need help. Some need more than others. If getting my soon-to-be 23 yr old son services, I would give him any label you wanted. I would call him a Ford Escort if that is what was required.

All I know, our kids are growing up. And once the public school system is done with them at 21, you better be ready to do some real fighting. You ain't seen nothing yet.

Having a child who has traveled from severe apraxa,dysarthria, dyspraxia, dysgraphia, motor disorders, APD, sequential processing issues up, slowly, surely, and steadily through to recovery.... today we prefer the term Spectrum Disorder. My son, today, would be offended to be called autistic for he is no longer Autistic after 12 years of therapy, special diets, chelation etc. (okay, does this make any sense?) Also, when he was considered ASD, he got bullied and tortured so the term has so many negative associations for him. But calling him a child with a Spectrum Disorder would be okay for him.

Thanks for this reminder Geoff! I dread having to navigate all of this mumbo jumbo legalese in order to secure the appropriate place for Andrew to live. Hopefully we can keep adequate choices for our kids.

Thank you, As a former English major (and MANY) years under my belt, I have always been a bit impatient with the warping of word definitions. As the parent of an adult with severe disabilities, I worried more about the time taken to wordsmith when actions were desperately needed. Moderation in all things may lead to a better balance everywhere. Meanwhile I appreciate this gentleman's awareness of the diversity of needs, particularly of those on the outer edges of the Bell curve. They must also be included and accepted, with their personal wants and needs considered. Loneliness and feeling "different" are things we need to minimize as much as possible.

Is the study of psychology that is driving these names?

Regarding the comment that autism “impairs language development,” a new book by a severely autistic boy shows that this may not be the case. The book is “Ido in Autismland.” Granted, he has no speech, but he sure has fluent language. (He uses a keyboard, as does Carly Fleischmann.) Ido’s behavior, he readily admits, is “outrageous.” But there is no deficit in his intellect. I don’t mean he is a savant. He is just plain savvy, so full of insight on many subjects. I look forward to his turning 30 and becoming a senator.

I really lost some patience with this whole label issue when someone in the community tried to introduce the term " infusion" as the new word for integration! I agree with you, "aspiesmom," the worst harm has to be done be the label "neurodiverse. "

No complete cure - unless it is for drug abuse.
Cures are expensive; draining families as they send them off to the south or way out west.
When they return they get back on drugs.
It appears now that the jails are full -there is not even prisons for them .

Drug abuse is comorbid with mental illness

Do any of you watch "Hoarders"
They say they won't get rid of stuff, but I notice it is more of a cleaning problem.

The guys doing the TV programs says there is no problem finding these people.

Yes! I also think 'inclusion' and 'integration' are over-rated. Unless they are done right, which rarely happens due to cost, these experiences can be overwhelming, humiliating and just downright scary for some people.

Autism is a serious neurological disorder that impairs language development and often also includes movement disorders, chorea and athetosis. Aphasia, Huntington’s chorea, and athetoid cerebral palsy cannot be dismissed as mere differences. Nor should autism.

Euphemisms are not helpful. Mental retardation was adopted as preferable to feeble-minded, which had been adopted as preferable to imbecile or idiot. Schizophrenia (split personality) was adopted as preferable to dementia praecox, and like autism seemed mysteriously romantic to some, and quite a few people still feign to be schizophrenic or have multiple personalities.

Impostors drain resources away from those in true need. Thus the Department of Mental Health (DMH) in Massachusetts has adopted the slogan “recovery is real.” Recovery may be possible for addicts to chemical substances, before they become brain damaged beyond hope. The term “mental illness” has replaced insanity and lunacy. DMH in Massachusetts no longer guarantees housing for all “consumers.” The severely mentally ill are now left homeless out on the streets. This is what I now fear most may happen to my son.

Almshouses, workhouses, and state hospitals are just as much needed as they were in the past. They were dismal places, but efforts should have gone into improving them rather than disbanding them. My son’s best years were when he received care and schooling at the Massachusetts Mental Health Center children’s unit, and later at the Westborough State Hospital.

My grief is treated with disdain by the “mental health” establishment.

The worst has been "neurodiversity", especially by famous people who "claim" they have autistic disorder, as if it's popular to say you have Asperger's Syndrome or something! While living independently and symptom-free , really?

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