Monday with Maureen: What Happens When Help Ends at 21?

???????????????????????????????????????????????????I know a lot of people are talking about the Dateline special on young adults with autism. This story struck me in particular.

‘You Don’t Outgrow Autism’: What Happens When Help Ends at 21?
Nickolas Kubicsko and his family were about to take their first family vacation in seven years.
There was no question where they’d go: The Happiest Place on Earth. Twenty years old at the time, two years ago, Nick had been obsessed with Disney movies since he was a little guy.

“He very much liked his videos to the point where there was a while he would go back and forth to school with the duffel bag with 150 to 200 videos. He would get these impulses and needs to (think) ‘I have to take this to school with me,'” said his mother Lenore Kubicsko said.

Nick has Autism Spectrum Disorder and for years when he was a teenager it just wasn’t possible to take him to Disney.

On the spectrum of autism, Nick’s symptoms are more severe. He communicates through a computer device that generates speech and struggles with social interactions. He needs supervision and learns best in a one-on-one environment.

But now here they were — on the Dumbo ride in Fantasyland. Nick had a spark in his eyes. His mom and sister grinned from ear to ear.

They were able to make the trip because Lenore had found a new way to help Nick after he’d gone through a period of destructive behavior. His local school district on New York’s Long Island was paying for aides and tutors who would work with Nick in the home.

Problem was — all of that was about to be taken away. Nick was nearing his 21st birthday.
Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they’ve had for most of their lives. And there is no equivalent state or federal support required to take over.

Parents of children with autism compare it to falling off a cliff.

“Happy graduation,” Lenore Kubiscko said with sarcasm in her voice. “Everything that we’ve worked for we are taking away and you will leap off a cliff into nothingness. Right now the picture is nothingness, it’s black. Absolutely black.”

Mary Clancy was feeling the same way. Her son Eric was about to turn 21 too and graduate from a specialized school for children with disabilities called the Rebecca School — a place he loved and thought of as his family away from home. After a legal battle, the Clancy’s won the right to have their local school district reimburse them for tuition, which averaged about $100,000 per year. But that would stop at graduation.

“Without purposeful things to do, he will fall back into the autism world. Into his own inner world,” Mary said. “He’s so much happier out of it. But that’s where his brain takes him. It’s hard.”
For three years, Dateline followed these two families as their sons graduated from the education system and moved into uncertain terrain.

We watched as these mothers navigated bureaucracies, made phone calls for hours on end and got on waiting lists that were filled with thousands of names already.

As adults, their sons are eligible for Social Security and they can apply for services funded by Medicaid. But they were warned by parents and other advocates that many of the programs offered would not be tailored to autism. And even for programs that they didn’t think were ideal, there are waiting lists. Every state decides how to spend its Medicaid dollars and so there are great variations from state to state. In Florida for example, there are waiting lists that contain as many as 20,000 people.

Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.
“It’s a tsunami of children who are aging to adult life,” Walder said. “And we really have no safety net for them, or very few safety nets.”

Walder emphasized that people don’t stop having autism when they turn 21. “That is one of the general misconceptions about autism — is that it only affects children,” she said. “You do not outgrow autism.”

In 2012, the US Government Accountability Office issued a report that found students with disabilities face longstanding challenges in accessing services as they “transition” to adulthood. The report cited a lack of sufficient information or awareness of the full range of service options, long waiting lists and a lack of clarity over which government agencies are responsible for helping young people.

“Although federal agencies are engaged in some coordination efforts,” the report found, “these efforts represent a patchwork approach… there is no single, formal, government-wide strategy for coordinating transition services.”

After a recommendation from the GAO, the federal government issued a new “Federal Interagency Strategy” in February of this year.

“I think we have a lot of work to do,” said Sharon Lewis, Principal Deputy Administrator of the Administration for Community Living at the Department of Health and Human Services and the Senior Disability Policy Advisor to the HHS Secretary.

“I think what’s important to recognize is that when we talk about youth and young adults with autism, we’re talking about a really broad range of people. When the CDC estimates that 1 in 68 8-year-olds in this country have an autism spectrum diagnosis, we’re talking about kids, some of them who are going the earn PhDs at Harvard, and some of them who are going to need 24/7 supports for the rest of their lives.”

Lewis said she understands the frustrations of families of children with autism and agreed that it’s unfair how much stress is put on parents. She said it’s unfortunate that too often the time students spend in the education system isn’t helping prepare them for the future.

“We have a long way to go,” Lewis said. “We know that students with disabilities don’t graduate at the same rates as their peers. They don’t necessarily exit with the same sets of skills. And we have to really use our education system to insure that students have the opportunities to be contributing citizens regardless of the severity of their disability.”

“We have not addressed the need for long-term service and support in this country,” Lewis said. “There have been multiple efforts at multiple levels, in the Congress, in the Administration, to come up with a long-term care financing structure. And there has not been political agreement.”
Lenore Kubiscko and Mary Clancy hope that by adding their voices to the discussion, others will feel empowered to speak up.

“There needs to be a real mobilization,” Clancy said. “A real movement of people. Not just to demand services but to demand a change in the way autism is viewed … It’s not a frightening, dangerous thing … They are very gifted people who want a life, just like everybody else.”

Monday with Maureen: Advice for parents of children just diagnosed with autism

slide-3-foregroundFrom the parents who have been there, done that…let’s not forget to share the knowledge & wisdom that comes from the journey of autism.

Advice for parents of children just diagnosed with autism, from those who’ve been there.

I was talking to a friend last week about her son, who was recently diagnosed with autism. He’s 8, and she is feeling frustrated and overwhelmed — not by her son, but by the challenge of figuring out what to do next.

Once you have that diagnosis in hand, the questions start piling up. What services does he need, and what will insurance cover? What really works, and what is just a hopeful shot in the dark? How can she get the most out of the public school system? Who coordinates all of this? Do you need a small army of specialists or just one really good behavioral or occupational therapist? And what is ABA, anyway?

I didn’t have all of the answers for my friend’s questions about therapies and billing and case managers. That all varies by kid, by insurance provider and by where you live. I pointed her to a few Web sites, including, Parents of Autistic Children of Northern Virginia and the Thinking Person’s Guide to Autism.

I also told her it gets easier. And that she should build a community of people she can get advice and support from. In other words, don’t rely just on specialists and professionals, but on other parents of kids with autism, and adults on the autism spectrum, who can help her better understand her son. Jason Katims, the executive producer of NBC’s “Parenthood,” and the father of a son with autism, once told me he thought finding that community was the first thing any parent should do after their child is diagnosed. I agree, because for me, that network of people is what has made things easier with my son, who has an autism spectrum disorder.

That network of new friends might recommend a therapist or a social skills group or a place for a haircut, and that’s incredibly valuable. But even more important, they get it. Whatever we are going through or struggling with or celebrating, many of them have been there and they can relate. A little empathy can help a lot on a difficult day.

So with that in mind, I reached out to a few of the people I’ve encountered along the way, and asked them to share their best advice for parents of children recently diagnosed with autism. Here’s what they had to say:

Sharon Fuentes, author of “The Don’t Freak Out Guide to Parenting Kids with Asperger’s,” blogs about her experience raising her son Jay, 13, at Mama’s Turn Now. Her advice:

“Your son or daughter is still the same person they were before they got the diagnosis. I know this may not have been the path you would have chosen to have traveled down, but some of the best journeys in life are ones that happened when we unexpectedly took a left turn. Yes the road can get bumpy, but that is when you need to reach out to all those that have been there before you who do whatever they can to smooth the path for your child. Remember that you are not alone, trust your own instincts, breathe, laugh often, believe in yourself and more importantly believe in your child and never ever lose hope! ”

Bernie DeLeo is the drama teacher at West Springfield High School in Fairfax and has a 20-year-old son, Charlie, with autism. This spring, the school staged a play DeLeo wrote, “Nerdicus (My Brother with Autism),” about his daughter’s experience growing up with a sibling with autism. His advice:

“My biggest advice to parents is, first, don’t panic.

Second, after the initial freak-out and panic (you will, even though I told you not to), educate yourselves and know your rights and options.

Third and most important, don’t let people tell you what they think your child is capable of. They will immediately see the disability, and NOT your child’s capabilities! Every child will be different. At my son’s high school, they recommended that he not take languages or aim for the Advanced Diploma. ‘Special Ed children tend not to do well with languages,’ they said. We ignored that advice, he took 5 years of Spanish — and now he’s living away from home and majoring in languages at Marshall University.”

Shannon Des Roches Rosa is one of the editors of the Thinking Person’s Guide to Autism, a book and Web site devoted to providing information information from autism parents, autistics and autism professionals. She also has a personal blog at Squidalicious, where she writes about her adventures parenting 13-year-old Leo, who has autism. Her advice:

“I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him. He was the same sweet, capable boy both before and after his autism diagnosis; the only change was my awareness of his needs. And he needs me to love him, respect him and champion him. He needs me to make sure he has time to play. He needs me to fight for appropriate communication and learning resources. He needs me to get him supports to navigate an autism-unfriendly world. Understanding instead of fighting Leo’s autism makes us both much happier people.”

By Mari-Jane Williams, Posted July 30 on The Washington Post

Monday with Maureen: 8 Autism Myths

Do you find yourself having to dispel autism myths often? It’s something I run into all the time. Today’s article highlights some of the more common ones.  

Autism Awareness: 8 Myths (And Realities) About The Spectrum Disorder

By Susan Scutti | Medical Daily

Myth #1: Autism is a form of mental illness.

Reality: Autism Spectrum Disorders (ASD) are considered a group of developmental and neurological disorders, as brain scans and studies show that people with an ASD have abnormalities in both brain structure and neurotransmitter levels. Continue reading

Monday with Maureen: What is the risk my next child will be autistic too?

????????????????????????????????????????????????????????????????????????????????????????????I’m sure you have asked yourself, “if I have a child with autism, what is the risk my next child will too?” Today’s article is a synopsis of a study just published that addresses that very important question.

Environmental factors as important as genes in understanding autism

Environmental factors are more important than previously thought in understanding the causes of autism, and equally as important as genes, according to the largest study to date to look at how autism runs in families.

The study also shows that children with a brother or sister with autism are 10 times more likely to develop autism; 3 times if they have a half-brother or sister; and 2 if they have a cousin with autism, providing much needed information for parents and clinicians for assessing individual risk. Continue reading

Monday with Maureen: New Autism Numbers Released

The CDC releases new numbers for autism–and they are staggering! Today’s article responds to the data.

Autism Groups React to New CDC-Reported Prevalence of 1 in 68 Children


WASHINGTON, DC (March 27, 2014)—Today, the U.S. Centers for Disease Control and Prevention issued the newest autism prevalence statistics. For children born in 2002, the prevalence of autism was 1 in 68; 1 in 42 boys. Almost 60,000 US 12 year-olds likely have autism. Thirty years ago, autism affected 1 in 2,500 children; there has been a 37-fold increase.

Katie Weisman of SafeMinds stated, “Broader criteria and awareness cannot account for this magnitude of increase. The federal government continues to spend millions of dollars ineffectively and ‘potentially duplicatively’ according to a recent GAO report. We need to identify environmental triggers for autism, prevent them, and develop effective treatments.” Continue reading

Monday With Maureen: DSM-IV vs. DSM-5

I am re-posting an article that addresses the new DSM-5 criteria. I hope you will find it as helpful as I did.

DSM-5 & Autism: Autism-Speaks Study Clarifies Impact of New Criteria

A new study finds that the estimated prevalence of autism under the new DSM-5 criteria would decrease only to the extent that some children would receive the new diagnosis of social communication disorder (SCD). Funded in part by Autism Speaks, the study appears online in the Journal of the American Academy of Child and Adolescent Psychiatry.

Overall, the researchers found that 83 percent of children who received a diagnosis of autism under the DSM-IV would still receive the diagnosis under DSM-5. The remaining 14 percent would switch to a diagnosis of SCD. These results help answer questions raised by a Centers for Disease Control and Prevention study published last week. Continue reading