April showers bring May flowers. What do May flowers bring? Pilgrims.
April also brings us:
…Alcohol Awareness Month and
- National Child Abuse Prevention Month
- National Donate Life Month
- National Facial Protection Month
- Irritable Bowel Syndrome (IBS) Month
- National Minority Health Month
- Occupational Therapy Month
- National Sarcoidosis Awareness Month
- STI Awareness Month
- Sexual Assault Awareness and Prevention Month
- Sports Eye Safety Awareness Month
- Women’s Eye Health and Safety Month
- National Public Health Week (first full week of April)
- Minority Cancer Awareness Week (second full week of April)
- National Infertility Awareness Week (last full week of April)
- Every Kid Healthy Week (last full week of April)
- World Immunization Week (last week of April)
- National Infant Immunization Week (generally last week of April)
- Air Quality Awareness Week (last week of April)
…Autism Awareness Month is in April too. Light it up blue? I’ll not do that. I’m aware all year, all day, all the time. The blue light thing seems silly to me.
The origin of the puzzle piece as autism’s unofficial symbol, dates to around 1963 when the National Autistic Society adopted it. They are said to have hoped the symbol would “symbolize hope for a puzzling condition.”I must share with you, on the topic of puzzle pieces, the most breathtaking piece of “puzzle piece art” I have ever seen, by autistic artist
Grant Manier- entitled “Collage Peacock:”
You may have seen Dateline’s recent episode about people who ‘age out’ from autism services and find that they’ve graduated into a world with NO services offered? (link to follow blog) Autism disappears because you’re an adult, right? NOT. I’ve hesitated to offer my two cents about this show because I found it to be so achingly personal. I believe that the two young men profiled in the Dateline story were considered to be along the “middle of the autism spectrum;” with one being nonverbal. I relate to NONVERBAL in a big way. I’ve experienced it.
My son, an adult now, is often judged harshly by people who have not known his journey. Not every personality quirk or difficult trait can be BLAMED on being autistic but patience, tolerance, guidance, assistance and understanding go a very long way. Some folks inevitably feel my son doesn’t measure up in many ways to what they feel a man should be.
I see him through a mother’s lens. I see his progress.
He is considered HFA (high functioning autism). He did not speak in Kindergarten at all. By the time he was five or six, he was seeing an OT (occupational therapist). I was attending meetings once a week to assess his needs in the classroom and would continue to attend these meetings throughout his entire school enrollment history. When he was 16 I found an advocate (Dan G.)
How did I get so lucky?
Networking.
Parents are the first advocates their children have, whether they’re on the spectrum or not. I already belonged to autism groups online so I posed a question to them as to whether anyone in my area could help an intelligent, overstimulated, scary, environment-sensitive, sometimes violent, aggressive, frustrated teenager with great potential and great communication challenges. Dan G. was recommended to me. He started school intervention immediately. Everyone NEEDED to be on the same page, so to speak. Dan’s intuitiveness, compassion, fierceness and knowledge was integral to my son’s high school success.
I remember one particular meeting. Dan and I faced the official looking army of a dozen or so school professionals seated around the table at a typical meeting. He had told me before the meeting, that if I became mute or otherwise unable to speak for my son, to write HELP on a piece of paper and push it towards him. Surprisingly, I did not need to do that…
We explained to them how my son was coming home from school and pacing frantically around the coffee table; emitting what I described as moose-like sounds. Dan’s ideas were reasonable, or so we thought. We had devised a game plan for my son. At that meeting, we requested:
*an opportunity to submit oral reports on taped video to be presented to the teacher, rather than standing in front of the room.
We wanted him to have:
*a safe room of sorts, where he would be allowed to escape if he felt overwhelmed.
We wanted:
*him to be able to fulfill his physical education requirements by working out in the weight room, rather than mixing with the class and participating in group games.
We wanted:
*additional time to complete assignments if needed.
We had a few other requests which we felt seemed minimal in the scheme of things, but we additionally felt those things would serve him well in the long run. In addition to these things which we presented at that meeting, Dan instructed my son in how to manage the ride to school on the bus. He could
*cut unwanted stimuli (noise, rough housing, interaction, etc.) by placing his backpack on the seat next to him to avoid possible troublemakers from sitting next to him.
Dan encouraged him to
*look out the window, to appear distracted (and not such an easy target).
He suggested
*my son wear headphones.
The principal was furious! She did not care how he made his environment more tolerable on the bus, but when it came to her school, she was not willing to make allowances for him. She did not want to assign someone to be with him in the weight room, for example, even though we explained that this would cut out a very stimulating part of his day. He’d been walking through the door at home, exploding with pent up overstimulation! And he was threatening to his siblings and cutting himself too. She was not agreeing to ANYTHING we proposed.
Dan, in his soft-spoken, polite and courteous (but also direct) manner, asked to talk with the principal in the hallway. I sat patiently, silently, with the teachers and professionals wondering what was going on behind the closed door.
Ten or fifteen minutes later, Dan and the principal came back into the room and took their seats. Dan was his usually composed self. The flustered principal’s eyes were red-rimmed. Had she been crying?
All of my son’s needs were met that day. The principal agreed to it all.
Upon asking Dan later what had happened, he said,
“There were some raised voices.”
Then he proceeded to tall me, “I can no longer take money from you to advocate for your son. From now on, let’s do this pro bono.” It is with his support that my son graduated high school…
I encourage you to read the following and use it as a template in your own area, if need be. Dan wrote this letter to the higher-ups:
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For the past twelve years I have served a large group of individuals who do not fall into human service systems that currently exist in the state of Connecticut. They have diagnoses on the autistic spectrum. For the past two years, I have met on a Commissioner’s level to try to find resolution and help for these people. To date, these people are still unserved, and in terms of existing services, have little hope for the future. In a meeting with the Department of Social Services, Medical Services Division, I was directed to you as one who may be of assistance in my work to advocate for others.
I would greatly appreciate your review of the following synopsis of a very serious social service problem, a potential solution that can be made on a legislative level, and the rationale.
The People
Definition: The ‘autistic spectrum’ refers to people who have either autism, Pervasive Developmental Disability, or Asperger’s Disorder. Birthrate: 1 in less than 250 births fall into the autistic spectrum (Dr. Ami Klin, Yale’s Child Studies Clinic) Rate of other Disabilities: Most individuals with autism or related disorders do not have mental retardation, nor do they have a separate diagnosed mental health disability.
Nature of Disability: It is considered severe and pervasive.
Dichotomy of Disability: It is primarily a social learning disability, although it has many other features. It is common to be considered ‘genius’ in terms of intellect and work skills, but not understand how to wash and dress in order to get to work.
Availability of Services: Most people on SSI and Title 19. The Bureau of Rehabilitation Services will assist a person on the job. Most people cannot get to a job without some initial personal support. The Department of Mental Health does not have a mechanism to support these people. The Department of Mental Retardation will only support if there’s coexisting diagnosis of mental retardation. Community agencies are not trained or educated about neurobiological disorders, and therefore cannot serve. As there is no money available to purchase services, agencies are generally not preparing to serve these people.
The Problem
Testing/Evaluation: Thousands of children have been tested and diagnosed with autistic spectrum disorder since the early 1990’s. These children are now ‘aging out’ into the adult world, and have needed special services throughout school. Once in the adult world, they may never reach self sufficiency if services abruptly stop.
Adults: Thousands of other adults who have been misdiagnosed are slowly getting rediagnosed (usually from Schizophrenia to Asperger Disorder). In the mental health system, they gained no skills to live in the community effectively. Now they are losing services, and are at risk.
Current Situation: Most adults who do not have an invested family, and one with resources, end up in complete isolation, and are at imminent risk in the areas of safety, health and welfare. Any social learning that occurred in school deteriorates over time, as does the person’s ability to access the community and work.
The Solution
I am requesting consideration of the Department of Social Services to become the lead department by Statute in the service of individuals with autistic spectrum disorders who do not have other primary diagnoses.
The Rationale
The Department of Social Services has the greatest capacity and internal system components to implement services beginning in the home, rather than the creation of facilities in the community. Facilities do not work. If a person does not know how to access the community and has difficulty tolerating people, beginning with the opening of a facility will only create a building with few users. The Department of Social Services has successfully created the Medicaid Waiver for people with traumatic brain injuries. This type of waiver may ultimately be a primary resource for the people with autistic spectrum disorders.
Unlike other departments, the Department of Social Services is most directly linked into personal assistant services, educational services, and ultimately to return to work services through the Bureau of Rehabilitation Services. It is this continuum that has been used successfully in supporting people from isolation to self efficacy and self sufficiency.
Other Implications
This is not a rising crisis in the State of Connecticut alone. It is nationwide. Many states are faced with the same questions about how to serve this large group of people. Connecticut is the leader in the Nation in terms of research, testing and evaluation. Should it take a stand to build technology, infrastructure and services in the community, it will be the leading State in all areas of this arena. The National Technical Assistance Center and the Center for Mental Health Services are aware of this problem. With an investment in people’s lives before the crisis, Connecticut may become a model state in the Nation for information, education and technology share. It may also stand out to the Federal Department of Health as a front-runner in Human Services.
Thank you, Representative Handley, for your review of this material.
Daniel J. G., M.A.
Clinical Habilitation Counselor
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Dan is gone from my life now. It seems that angels like him have come into my life from time to time and helped my son, my family, and myself as we needed them most. Thanks Amy. Thanks Starr. Al. Alison. Thanks Jen. Thanks Clay. Thanks to you Dan. In retrospect, I know I am ‘lucky.’ Connecticut finally did offer an innovative program for people who’ve aged out of the system and need supports. I belonged to the program for about 8 years. I decided to exit the program in 2014. The program is expanding and now offering many more supports for younger children. While this is a good thing, I wrote a letter to the director when I left the program and reminded them that
“the reason the program started was to help adults on the spectrum, who are an undersupported community. Please don’t ever lose that original intention, that focus,” I wrote.
I left because I wanted to sink or swim. I miss the fine people, the experiences, the knowing that “someone has my back.” But I’m doing okay…
Aspergers.
Is it different than the young men we see portrayed in the Dateline special? Is it different from less able, less functioning persons? Sorry for the labels. I don’t know how else to phrase it…Yes it is different. It’s also the same. It doesn’t feel mild, though. And speaking as someone who is diagnosed Aspergers, when I see people “mid to severe” spectrum, I see myself, I see my people, I want to advocate, I feel a belonging with them such as I have never known. To have no voice is scary. I know this firsthand. It makes you not only feel vulnerable, but it makes you vulnerable, period. That means you’re a target for bullies, for the intolerant.
At the end of the Dateline I saw something worth cheering about:
ART. I am trying to put together a book, and with the help of YOU readers, it is slowly coming together. I cannot stress enough the importance of autism and arts. Are you an advocate, mentor, teacher, support person of an autist who encourages music, drawing, drama, movement, music painting and the like? I want to hear from you. I want to know your journey. I once the heard the term: “Please share your story. It can be a support to so many. Don’t hog your journey!” Please contact me!
Art and autism can produce
hope
beauty
purpose
confidence
and so much more!
I write because I have to write. I’m compelled that way. For someone who has come so far, accomplished so much and quietly has so much to say, I can’t generate many FACEBOOK author page LIKES. Won’t you LIKE my FB author page? https://www.facebook.com/underthebananamoon?ref=hl
My experience with Connecticut’s autism program:
http://www.ct.gov/dds/cwp/view.asp?a=4402&q=525972
what happens when services end at 21, Dateline story:
http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066
interesting reading about the 1952 Spastics Society and early autism organizations:
artist Grant Manier and his ‘coolages:’
Raven Ambition's Aspergers BLOG 