Monday, December 08, 2008

Autism Twitter Day Should Include Severe, Low Functioning, Autistic Disorder Realities

December 16, 2008 will be Autism Twitter Day, an excellent idea from Bonnie Sayers/autism family.

I hope though that Autism Twitter Day, in an effort to be positive, does not exclude the severely autistic - those persons with Autistic Disorder who are low functioning and cognitively impaired.

On Autism Twitter Day let us not forget those persons with Autistic Disorder who live their adult lives dependent on the care of others, some in full institutional care. Let us not forget those autistic persons who do not appear regularly in the mainstream media to espouse grand agendas. Let us not forget those persons with autistic disorder who bite or otherwise injure themselves or wander away from their homes, some found safely some not. Let us not forget those autistic persons whose families can no longer help them and care for them and are left with no choice but to give them up to the care of the state.

On Autism Twitter Day let us not forget those for whom the "autism" spectrum is named.

Let us include those with severe Autistic Disorder on Autism Twitter Day,

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Bonnie sayers said...

Your son looks happy in his hammock. A childrens hammock is one of the prizes on autism twitter day.

I just tweeted this blog posting on twitter. My 12 yr old is severely autistic, nonverbal and not toilet trained. He has rages, and attacked me yesterday, so these are issues I deal with as well. He used to have PICA and ate tree bark, dirt, and rocks, but that stopped when he got on Risperdal and took milk out of his diet. Now on geodon and rice milk.

Unknown said...


Conor is a joy and a blessing. And he is severely autistic. I believe that speaking positively about autism should include the whole picture, including the challenges confronted by the severely autistic, like your son and mine, who can not speak for themselves.

Thank you for the autism twitter day and for your comments here.

Lili said...

I have a non-verbal daughter who is almost six, but it seems likely that my verbal, "high-functioning" 14-year-old son is more likely to need lifelong one-on-one care.

I have many positive things to say about both my kids, and I see that though autism affects them very differently, they are both "severe" in different ways.

Also, I am an adult on the spectrum who varies from non-functional to "almost normal" depending on what's going on around me.

At one time I was supposed to be a "hopeless case". I have been institutionalised in the past and have never lived without support. Yet now I am 36, married, and am raising my family. I still need lots of outside help, but I am in control of my own life, even though when I was in my teens nobody thought that would ever be possible.

What I hope you can take from my comment is that you should never give up on any autistic person. Even someone who is 20 years old, seemingly helpless, needs heavy medication, and is unable to go a day without a violent meltdown may go on to live a more normal life than most people imagine.

Arthur Golden said...

"On Autism Twitter Day let us not forget those persons with Autistic Disorder who live their adult lives dependent on the care of others," who were much lower functioning than your son Conor when age 12, such as my own son Ben, Sue Rubin and Sharisa Joy Kochmeister. But at age 12, Sue Rubin and Sharisa Joy Kochmeister started to learn Facilitated Communication ("FC") and even though still dependent on the care of others, went to college.

My own son Ben is several years older than Sue and Sharisa, so when he was 12, FC was not yet available, but he was making amazing progress with his first 4 years of ABA-type services. Unfortunately, when he turned 13 and was bigger than his all female staff, and even with a well-trained Teaching Assistant getting a Masters Degree at an excellent university, he became increasing aggressive while under his fifth year of an ABA-type program until he was completely uncontrollable at age 13-1/2. Fortunately, in September 1985 he was able to go to school in Japan for two years (starting 9 years of "Daily Life Therapy" created by the late Dr. Kiyo Kitahara) and my mother could pay the four million yen annual cost and most fortunately the exchange rate then made that only 15,000 U.S. dollars a year. Then he continued at the Boston Higashi School until August 1994, fully paid by our local school district and state government

First doing FC in February 1991, my son Ben took the lead in making a life-altering decision to go to Israel in August 1994 and has lived with us his father and mother since we also moved to Israel in March 1996. For the past 23 years my son Ben has had a wonderful life even with severe autism and needing substantial assistance. I realize I do not know what will happen after my wife and I are gone, so I am working with others, including my son Ben, on "planning for a good live for persons with disabilities."

Arthur Golden
Jerusalem Israel

Unknown said...


Thank you for your comment.

I do not suggest giving up on anyone. What I believe is that it is important to understand the realities faced by persons with autism, in this topic, those who are more severely autistic. I am opposed to the tendency to portray autism disorders in a positive light while ignoring the harsh realities faced by many autistic people and their families.

There are exceptions to everything but the reality is that some autistic persons have more severe challenges than others. Lack of ability to communicate or limited communication abilities are severe deficits.

Unknown said...

Mr Golden

I don't know how you determined that your son was much lower functioning than Conor at age 12 and I am not sure what your point is in making that comparison.

I am glad that your son is able to take the lead in making decisions about where he will live. And I hope that he has a good life while, and after, you and his mother are with him.

It is part of the reality for some severely autistic people that they can not live independent lives.

Unknown said...

Keep the conversation going... One Topic Many Questions...

Autism and Healthcare twitter day December 23rd all day #HHS
Tom Daschele invited Tanners Dad / Tim Welsh will be the Autism / Healthcare Community Discussion Host and Moderator. Sign onto twitter. Search for #HHS and post your comments
and answers to questions.

No prizes no games no tinsel Just a conversation for families fighting for children with Autism. Be There Tues Dec 23 ALL DAY Obama wants to know.