I conducted an email interview with Dan E. Burns, Ph.D., author of
Saving Ben about the new autism rates. His son is currently 22 and is dealing with issues now that will only get worse when the rising number of children now being diagnosed with autism become adults. After you read this, I urge you to leave a comment about your concerns. We need to make our voices heard.
You can also join me, Stacie with
Super Mommy to the Rescue and Jon Gilbert with
Same Child, Different Day in our email campaign to the government. You can read more about our efforts here,
Government Officials Need to Respond to Rising Autism Rates. A copy of the email we are using can be found on my post,
Reaching Out to the Government to Help Our Children.
Here are the questions and answers for my interview with Dan E. Burns is author of Saving Ben:
Question: What was your reaction to the new CDC autism rates?Answer: I was surprised that the CDC rate 1 in 110 was not higher. The commonly quoted prevalence rate from October 2009 issue of
Pediatrics was 1 in 91, and anecdotal evidence suggests that both rates understate the problem. Dallas Independent School District (DISD) had three or four autism classrooms fifteen years ago, when Ben entered the system. DISD is planning to open ten new special education classrooms this year, mainly to serve ASD students. Big picture, we are looking at a 10-fold increase in ASD students in the last decade. Clearly, there is a growing wave of ASD students rolling toward graduation.
Question: These rates are based on children diagnosed with autism. How do you see this affecting children when they are adults?Answer: When Ben was diagnosed, his pediatric neurologist said, "Save your money for his institutionalization when he turns 21." Ben is 22 and has aged out of the school system and related support services. He is at the lip of a tsunami of aged-out students who are about to hit the impact zone and will need jobs, homes, and supportive communities.
Question: Do you think the government will be prepared to assist such an increase in autistic adults in the future?Answer: Governments are unprepared for the impact. As an example, last October, Ben interviewed with the Texas Department of Assistive and Rehabilitative Services in search of a job. He was informed by letter that "It has been determined that an employment outcome cannot be achieved because of the severity of your disability. Therefore, you are not eligible for vocational rehabilitative services." Without a job, Ben's opportunities to live in a group home are severely limited. And the supportive community that surrounded him at school has simply disappeared. Ben is left in the shore dump.
Question: 3. Do you think that the government is currently meeting the needs of autistic adults? If not, what will this mean for the rising number of autistic children when they are adults?Answer: No, government is not currently meeting the needs of autistic adults. According to a CARD in Florida, "
The Current State of Services for Adults with Autism," 74% of autistic adults want to work, but only 19% are currently working.
As usual, policies pressure for a solution must come through parents. Advancing Futures of Adults with Autism (
AFAA) is holding national town hall meetings and is preparing a national agenda for presentation to Congress and President Obama. Meanwhile, there are some things that parents can do for children who have not yet aged out. Here are five things I wish I'd done before Ben graduated:
Institute a rigorous program of household chores and savings.
Consider a summer job instead of summer school.
Participate in weekend work retreats with your ASD child.
Work with the school system to create internships in sheltered workshops.
Resist school system dependency. Teach your child to advocate for himself.
Whether our children are school age or adults, we are in this together.
Dan E. Burns is author of Saving Ben: A Father's Story of Autism. See a 2-minute video review of the book,
HERE.
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Comments (18)
He will become a guinea pig for some wayward agenda. I'm thinking about conquering ebola. they were just competing with me.
Do you want to know what they're going to do to Ben to make him stop acting out? They're going to fry his brain so that he's a vegetable. I'm a vegetable. http://www.youtube.com/watch?v=gprLXOZPNg4
Keep on talking like a novacane hurricane
Low static on the poor man's short-wave
Stampede's got to dismantle
Code-red: what's your handle
Mission incredible undercover convoy
Full-tilt chromosome cowboy
X-ray search and destroy
Smoke stack black top novacane boy
Got so low your mom won't drum
Getting late with the suicide beat
Test-tube, still-born and dazed
Chump scum plays in the razor's haze
Got the momentum radioactive
Lowdown!
Circumcised for the operation
Don't expect some generation
Cyanide ride down the turnpike
Hundred hours on the miracle mic
Grinding the gears eighteen wheels
Rigs and robots riding on their heels
Fine tune robot making a sand box(?)
Heats and infernos burning like drano(?)
Down the horizon purple gasses
Semi-trucks hauling them asses
Novacane, hit the road expressway
Explode!
Novacane! Novacane!
We have to ban together. I'm a schizophrenic, btw. Or I was. Now I'm a monkey.
@Colorsofthenight@xanga - He will become a guinea pig for some wayward agenda.
Why would you say things like this to someone who is obviously scared and asking for help? Are you purposefully attempting to hurt her?
@ZombieMom_Speaks@xanga - she should be scared. I'm sorry, this sucks. It's like, if I reach out and we all group together we can make them stop. Trust me, nobody will help you alone. They'll distort and manipulate.
@ZombieMom_Speaks@xanga - you focused the argument on me. Did you read the lyrics or watch the video to infer what it was saying?
@Colorsofthenight@xanga - I understand, I have the same worry with my two on the spectrum. It was just the way it was said. We do all need to work together. Sometimes that means being supportive too.
@ZombieMom_Speaks@xanga - being schizophrenic, I don't pick up on diction as well as other people. I don't have emotions.
I am a mom and an autism motivational speaker. I go out and speak for those who can't. We didn't discover my son had autism until he was thirty-two. He is almost thirty-eight now and he has been living on his own for the past thirteen years, even though the professionals deemed it to be impossible. I am currently writing a post about what has happened with his life since the financial crisis hit. I am also writing a book to help parents who have young children with autism advance to adulthood. Right now there is very little out there for our autistic adults. The number one question is what will happen to my child when he or she becomes an adult? My son is living it now and I have much to share. Please check my posts I think they may bring you hope.
@ZombieMom_Speaks@xanga - did you read the song?
@Colorsofthenight@xanga - I'm sorry. I didn't know your situation and I wasn't trying to attack you. I was more surprised by the wording than anything else. And yes, I read the lyrics to the song you posted.
@amaliastarr - Thank you - I'm on the way to check it out now.
It isn't pretty. As the interview indicates, the school system basically does what they can and then dumps them. Ours gave my son false hope about his college prospects, and instead, should have transitioned him into some type of supportive environment/work situation where life skills were taught. He instead failed repeatedly at college, and due to his autism, wasn't a very good advocate for himself with the special services that were available to him. He also stopped taking any medication that was helpful to him and began to self-medicate with other substances. What the school system doesn't tell you is that once they're 18, unless you get legal guardianship before that point, your autistic child can refuse and resist all parental decisions about medical care, schooling, anything, and they are on their own to make decisions, good and bad. My son is "high functioning" enough that he knows he doesn't want to be labeled or take meds or do the right things to help himself, but low functioning enough that he literally cannot function without constant help, and often makes bad enough choices that he ends up in jail or worse. Police and courts don't care that he is cognitively and autistically disabled. He is working at a low level job, and has kept that more than a few months, which is good...he doesn't like it, but he does it. He is with a woman who manages all their household and financial stuff, and she somehow manages him, too, although she has issues of her own. It's sad, but maybe inevitable, that special needs people seem drawn to each other. If they can just make a go of it, somehow....Another friend's ASD son, who is 19, is helping him with his first apartment, and gives him an allowance, and is using his woulda-been college money to fund this....he cannot find a job, has not succeeded in college courses, and once the college money runs out, then he will be eligible for more public assistance/programs. Since he is not yet 21, he is eligible for special services, but he has to be willing to avail himself of these programs, and so far, he is not cooperative. Time will tell, with these kids. Some of them have other issues as well as ASD - bipolar, ODD, schizophrenia, substance abuse, and that all brings with it a whole other realm of difficulties, and these "kids/adults" often cannot remain at home because of their behaviors which are so hurtful to the family - I'm talking about substance abuse, violent behaviors, etc...not just typical ASD behaviors. There really is no good setting in place for them, and parents are having to try all kinds of things, trial and error, until maybe something will at least allow them to live semi-independently, but it is a very hard road, full of bumps along the way.
I wish there was a good answer, an easy transition, something that is in place for them after they get out of high school....many cannot handle college or technical training, and only graduated high school as a special ed student, and are thus not prepared for higher education or the real world. It's a lousy system.
@Colorsofthenight@xanga - Your reply is especially cruel and unhelpful. Nobody wants to watch a video when they are looking for feedback. Reading lyrics is helping either.
People are trying to find solutions and work together, not whine and complain about the way things are and do nothing about it.
We are not interested in your juvenile jokes at the end of your comments either. Did you really think anyone was going to take you seriously?
@paper_heartbreak@xanga - no, nobody does, you piece of shit. You're unable to separate arguments from yourself. You suck and you're lame and you're ordinary, nothing special about you, and you'll never get anywhere in life, so just shut up and be nice because nothing really matters. Yes, they are doing that to people. They call it numbing but I'm in a lot of pain and her son will be a victim too. I am a victim. I am not going to support a pity party. I'm telling the horrors of life.
My head is about to explode.
@Colorsofthenight@xanga - Hey, name calling, that'll get me to listen to you. Actually, it just made me disregard you and ignore your comment altogether. You shouldn't have wasted your time. You obviously have nothing to contribute.
@paper_heartbreak@xanga - http://www.youtube.com/watch?v=YgSPaXgAdzE = you, just admit it. You came from an average family and you produced less than was put into you.
I'm short, ugly and I have the IQ of a monkey after being hit my novacaine. I'm in a terrible amount of pain. wah
@paper_heartbreak@xanga - no, i have more to contribute than you, so kill me. I have a body. A living, breathing body that is going to end up in a wonderful lab. Would you give as much as me? Somebody needs your kidney. Their IQ is higher.
Namecalling is fun. Why lie?
You attacked me. You didn't even consider what I said, and you want me to respect you?
It's pointless. You're a worthles, self-absorbed prick that'll come after me to prove that you're somehting.
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Colorsofthenight is an attention-seeking troll, nothing more. S/he has made many cruel and unhelpful comments on various posts on Autisable.
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