Troubled Future For Young Adults On Autism Spectrum

Michael Moscariello, 32, looks out through the front door of his Cambridge apartment complex. Michael is on the autism spectrum, as is his younger brother, Jonathan. “[My sons are] the pioneer generation” for children on the spectrum, their father, Pete Moscariello, says. (Jesse Costa/WBUR)

Michael Moscariello, 32, looks out through the front door of his Cambridge apartment complex. Michael is on the autism spectrum, as is his younger brother, Jonathan. “[My sons are] the pioneer generation” for children on the spectrum, their father, Pete Moscariello, says. (Jesse Costa/WBUR)

“Mom, Dad, what’s wrong with me?”

Michael Moscariello was a smart, thoughtful 10-year-old when that question burst out one evening before dinner.

He knew from kids at his school in Reading that something was not right. His parents knew too; they had a diagnosis. But it was a condition that almost no one had heard of — not doctors or teachers, and certainly not friends or family.

That night, Michael’s parents used a classic diversion tactic. “Nothing’s wrong, nothing’s wrong, everything’s fine,” Michael remembers them saying. “Do you want to get pizza?”

“[My sons are] the pioneer generation” for children on the autism spectrum.
– Pete Moscariello

May Moscariello, Michael’s mom, had taken him to Franciscan Hospital for Children in Boston three years earlier, in 1988. “They evaluated him and came up with Asperger’s syndrome. It was their first case,” May says. She remembers a doctor telling her that Asperger’s was a hot topic in London at the time. The doctors “gave me a lot of written material from England,” she says. “None of it mentioned autism.”

Today, Asperger’s is folded into the broad diagnosis of autism spectrum disorder (ASD). This includes people like Michael who are bright and articulate, but can’t understand the look that says, I’m serious, or that hint of sarcasm in a friend’s response, or why people back away during a conversation. One in 68 children in America has an autism spectrum disorder.

Michael, now 32, is on the spectrum, as is his younger brother, Jonathan, 29, who has a sort of catchall diagnosis of pervasive developmental disorder not otherwise specified. Their lives, as adults with autism, raise troubling questions about whether the flood of children receiving this diagnosis will find meaningful work, safe housing and networks that will help them become happy and productive adults.

“[My sons are] the pioneer generation” for children on the autism spectrum, Pete Moscariello says.

Being The 1st Child With Asperger’s — Over And Over Again

The Moscariellos’ pioneering journey with autism began with Michael. His childhood was a series of “dead ends, many, many dead ends,” says May, a small, fit woman who coaches amateur figure skaters.

At first, she thought Michael could be happy at the local elementary school. One person on staff had read a little bit about Asperger’s. Teachers who weren’t familiar with Michael’s condition still “bent over backwards to try to help,” May says. Through trial and error, teachers figured out how to avoid the emotional outbursts that could ruin Michael’s day. He could handle two setbacks, teachers realized, before he would explode.

“I don’t know how they did it, if they had walkie-talkies or what,” May says, but the teachers would know, “OK, one more disappointment and he’s going to blow.” Michael could have stayed in the public elementary school and succeeded academically, May says, but socially, he was miserable.

The Moscariellos went looking for options. It was hard to find a place where Michael’s awkward social skills and emotional outbursts would not make him a target of ridicule, and where the goals went beyond learning to read, which Michael started doing at age 3.

The Moscariello family (Michael is at left, Jonathan is at right) at the wedding of Brian Gordon, Jonathan's mentor (Courtesy)

The Moscariello family (Michael is at left, Jonathan is at right) at the wedding of Jonathan’s mentor (Courtesy)

May remembers constant phone calls to doctors, researchers, her insurance plan and other parents. She and Pete drove for hours on weekends to the homes of other families who had young sons with Asperger’s, “because all these kids want to feel is that they belong,” she says. “[None of the] medical stuff is really going to help them as much as having a friend.”

Michael found friends. “We’re still searching for that for Jonathan,” May says.

May shudders, remembering the times she punished her children for doing things that she realizes now they did not understand were wrong.

One hot day, May asked Michael to pull down the curtains. She meant shades, and “pull down” was not the right phrase to use with a child who takes words at their literal meaning. Michael ripped the curtains right off the wall and was beside himself when May yelled for him to stop.

Michael spent six years at a Lexington special education program for students with learning disabilities. But Michael longed to go to what he calls a “regular high school.” So he went back to Reading, where his dad was head of the math department and the baseball coach. The school built a program for Michael and he persevered.

“I was very proud of myself. I didn’t think I was going to be able to do it,” Michael says. But a friend in Lexington told Michael, “’I believe in you.’ Next thing you know, I started straightening up my act, getting more control over my emotions.” Michael says Dave, the friend, “saved my life.”

Michael graduated from Reading High School at age 22. A federal law, the Individuals with Disabilities Education Act, requires that schools provide appropriate programs for students, including those on the autism spectrum, until they are 22. Some students stay in high school until they “age out” because they need extra time to complete graduation requirements. Others delay graduation because once they leave school, their access to special education programs ends.

“There is no entitlement to adult services,” says Susan Parish, a professor of disability policy at Brandeis University.

One recent study found that more than half of young adults with ASD had not moved on to higher education or had a job, two years after they graduated from high school.

“We knew from talking to parents that outcomes are not great for lots of kids on the autism spectrum when the leave high school,” says Paul Shattuck, the study’s lead author and an associate professor at Drexel University’s Autism Institute. “We were kind of shocked at just how not great things were.”

Michael had a mentor, training in social skills and a daily routine that all ended when he turned 22. He and his parents began the next leg of their pioneering journey, searching for ways to help Michael become a happy, productive adult with Asperger’s.

For Michael, The Perils Of Life On His Own

Michael Moscariello works on an anime character PVC model in his apartment. (Jesse Costa/WBUR)

Michael Moscariello works on an anime character PVC model in his apartment. (Jesse Costa/WBUR)

The Moscariellos spent about $40,000 each year for the next five years after high school, sending Michael to residential programs where he learned how to grocery shop, cook, manage a bank account, apply for jobs and live outside his parents’ protective home. There are no low-interest college-type loans or tax-free savings plans that cover these programs for young adults with disabilities. That may change if bills pending on Beacon Hill or Congress pass.

The legislation in Massachusetts would also lift an outdated restriction on disability benefits. Right now, no one with an IQ above 70 qualifies; both Michael and Jonathan score well above 70.

But they need help, a lot of help, with their social skills. Michael worries a lot about losing friends. He doesn’t want to repeat mistakes he made as a young adult.

“There was a girl I was friends with,” Michael begins. “Every time I saw her, I’d just have to go over and talk to her. I’d be like, ‘Hey, it’s me, let’s talk.’ ” Michael realized he was “talking her ear off” and perhaps missing some clues about whether the young woman enjoyed the conversations. He was devastated the day that young woman said, “Stay away from me, I don’t ever want to speak to you again.” Another friend helped Michael understand what he’d done wrong.

“Sometimes just saying hello is more proper than stopping to talk to everyone I know and see all the time. People got stuff to do. That’s how things work,” Michael says. “I didn’t know any of that.  Finding out hurt, but I took it as a learning experience.”

Michael’s parents call him a worker bee. When he has a setback, he tries again with a different approach. Michael must learn the rules for executing everything from a casual hello to close relationships, practicing steps that many of us take for granted.

Michael’s parents speak to him almost every day and see him once a week.

After five years in residential programs, Michael told his parents he wanted to get an apartment on his own. May and Pete worried that someone might take advantage of their son.

“Michael’s loving and giving and trusting of everybody, that’s the danger,” May says. “He’ll say to me, ‘I’m good mom, I’m safe, I’m fine,’ and I would say, ‘Yeah, until you’re dead. So wake up.’ ”

That conversation happened after Michael told his parents that he’d been bringing people he didn’t know very well back to his apartment, people who needed a place to stay. No more, his parents said, or you’ll give up the apartment and move back home.

Michael’s apartment is partially subsidized by the city of Cambridge and the state. He gets Social Security assistance, based on his disability, which covers most of his expenses. He’s on food stamps and Medicaid. His parents help with about $300 a month.

Michael is working on a book about his experience with Asperger’s. (Read some of his writing.) He also writes science fiction. “Star Trek” and various superheroes have pulled him through many difficult moments. When he was the only kid who didn’t get picked for kickball, he’d wander into the woods and imagine himself saving people. Today, he and his brother both love dressing up as superheroes and going to conventions where they can socialize with like-minded superhero devotees, and feel as fearless as their characters.

‘I Want Actual Job Satisfaction’

Michael has not been able to find or hold a job that he says is worth his time. He’s had internships in bookstores, volunteered in animal shelters, and worked at Toys “R” Us, Walgreen’s, a Web hosting company and a grocery store bagging items.

“I had to stand at the edge [of the counter] and wear this stupid apron and say ‘Paper or plastic?’ so many times that the words lost all meaning,” Michael remembers. He wasn’t allowed to talk to people, something he loves to do, “because if I tried, it was like, ‘You’re holding up the line.’ ”

For two years Michael saw a job counselor at a state agency for disabled adults, but he says everything they suggested was menial work.

“I don’t want to sort through huge piles of batteries,” Michael says. “I want actual job satisfaction.”

He meets once a month now with a jobs counselor at a different agency. In the meantime he plays video and board games a few nights a week with friends, and he writes.

“Mike’s a success story,” Pete, his father, says, “but it’s been a tough road and it’s always going to be.” His parents, who are in their early 60s, remind Michael that they won’t always be around.

“I feel like the window is kind of closing here in terms of getting him everything he needs to be able to live a happy life,” Pete says, pausing to let a wave of emotion pass.

Pete is optimistic that Michael will eventually find the right job. But who will keep an eye on his son? The Moscariellos have a daughter, but Pete says he’s determined to let her have her own life, and not expect her to take care of elderly parents and two brothers with autism.

“As we look for lifelong support for Michael, we don’t know where to turn,” Pete says. “That’s the scariest part, the day-to-day worry I know my wife and I suffer through.”

Worry Increases With Jonathan

Jonathan Moscariello, left, and his mentor, Brian Gordon, chat while standing in line to order breakfast. (Jesse Costa/WBUR)

Jonathan Moscariello, left, and his mentor, Brian Gordon, chat while standing in line to order breakfast. (Jesse Costa/WBUR)

At age 3, when Michael’s younger brother, Jonathan, started to read, May cried.

“That was my cue. I knew I was in trouble,” May says.

There were other signs of autism: Jonathan was obsessive, anxious and prone to temper tantrums. He would be another exceptionally bright boy, May imagined, struggling against a world he could not navigate and that would not understand him.

The brothers are different. Jonathan is three times more anxious than Michael, May says. Jonathan went to several different schools before graduating from Reading, at the age of 21. But he was too afraid to try the residential programs that helped Michael learn to live independently.

“We couldn’t make it happen without,” Pete pauses, “throwing him off the deep end, you could say, and letting him swim.”

While Michael was still in school, the Moscariellos brought one person after another into their home, trying to find someone who could draw Jonathan out of himself and the house. Finally, a mentoring agency sent Brian Gordon.

“He saved my son’s life,” May says of Gordon. He worked with Jonathan three times a week. Jonathan started playing the guitar, they would go out to eat, and Jonathan got a job.

Then Jonathan turned 22 and, like Michael, he aged out of state services.

“Jonathan was left in a world without Brian, and the world fell apart. There was no one there to support him,” May says.

Jonathan had a disagreement with a customer at his job. He lost his temper and was fired. Now, May says, he’s too afraid to work again. The family hired Gordon on their own, with more limited hours. Jonathan, seeing Brian outside the mentoring agency, decided that Brian should become his friend. Jonathan didn’t want to work on any of the life skills Brian thought he needed to tackle. Brian pushed back with new rules for their visits. These days, the two see each other weekly. It’s one of the few times Jonathan leaves his parents’ house.

The transition from high school into the adult world “is often catastrophic” for young people and their families, says Parish, the Brandeis professor of disability policy. “With the prevalence of autism, we’re talking about thousands and thousands of individuals across the U.S. who, when they leave high school, face a dead end.”

Parish says it’s such a waste. “Denying these individuals their chance to participate in society, civic life, communities, is just a terrible thing to contemplate.”

But creating the right opportunities will be costly — for parents or for taxpayers.

Pete and May have looked at expensive day and residential programs for Jonathan, but so far he refuses to consider them.

“Jon’s very articulate, very bright and he writes well,” Pete says. “He’s got a sense of humor. But his anxieties and fears have just hamstrung him to the point that we’re not progressing right now. That’s our day-to-day worry.”

May, who says she’s the stricter of the two parents, tells Jon, “We [your dad and I] only have 20 years left. You’ve got to get your [act] together. We’re on borrowed time.”

May does not blame Jonathan. “The end of the story is that my kids were crushed socially, by the world,” May says.

Pete says the next generation of kids on the autism spectrum — many of whom have more significant challenges than Michael and Jonathan — will be better off than his sons because the services begin earlier and begin to fit the specific needs of children with autism.

But Michael and Jonathan need help now.

“They’re tired of being pioneers,” Pete says. “They need support.”

The radio version of this story aired in two parts. Listen to both below.

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  • The Heartbroken Parent

    I cried all the way through this article and also reading much of the
    postings. Being a parent of an autistic child is something you cannot
    explain, you need the experience of living it. I could relate to so
    many of you and your children’s struggles. It also gave me new insight
    because I have not given it as much thought yet over what will happen to
    our son when the day comes that we are gone. We started are family late in life and our children being on their own without us sooner than later is a reality that I haven’t focused on yet. How will he get by in life and be happy? Will others take advantage of him? What will happen as he continues to digress?

    Before I can think that far ahead I am caught up in trying to get the local
    school to even acknowledge his disabilities. Our son went from Early
    Intervention to turning three and left to his own devices. Unlike
    the experience of the Moscariello Family, our public school has never
    wanted to help our child. I think that several teachers would have
    liked to, but the bureaucracy of the administration keeps them silent.

    Early on we could never afford the coveted neuropsych report,
    yet we had plenty of medical documentation to prove he had a disability.
    Despite IEP meeting after IEP meeting he never had an IEP implemented.
    We even requested the state list for an Independent Evaluation and we received a
    refusal (in writing) from the school district. We heard from people all the
    time stating the school can’t do that, but they did. Our experience has
    been help comes to those children whose parents can afford it alone.
    Six years later he will be nine-years-old next month. He started
    school late with hopes he would “catch-up”…to no avail. He is entering
    3rd grade (although technically he should be in 4th). Current
    neuropsych report states he is working some levels at kindergarten
    and first grade. The school at IEP meetings they just say he is fine at
    school and is denied IEP, even though their own testing has largely
    backed up that our son needs help. Again, the teachers are bound and
    cannot back up their own reports. My family has spent thousands from
    our retirement funds, our child’s “college fund” and credit cards on
    advocates, legal fees, evaluations etc. and yet our child has no IEP and
    the school basically just looks the other way.

    What happens to all these children like yours and mine? What happens to the disabled child who cannot get help? Where will they end up in life? When will
    we act like so many other successful, responsible countries that educate
    the child in their nation without question? Why does education in
    the United States only come available to those who are connected or have
    a lot of money? It isn’t fair, but that’s life.

    And so our son gets older, grows more behind, digresses, his self-esteem
    plummets and as parents we deal with the aftermath of his meltdowns and stating
    “I’m stupid” and “I’m a freak” and as parents we are left trying to diffuse a situation while our other child looks on. It doesn’t have to be this way, I just don’t understand it…

    • Peter Moscariello

      My wife and I certainly empathize with your heartbreak and fears. Feel free to contact us if you would like to talk – sometimes just talking can help to know that you are not alone.
      Pete
      petemosc@verizon.net

  • Gina R

    Our son is 18 & recently graduated high school. He plans to attend Community College in the Fall. He is bright but lacks proficient social skills. He has Mass Health as a secondary insurance in addition to our primary private insurance. We would love for him to live in a dorm and go away to college to have the full college experience. However, we ‘re not sure he would even go to class. He is very high-functioning but rejection by peers has taken its toll. He would love a girlfriend and to be invited to parties but is unable to make small talk. There is a residential program in CT that has apartment style living, a residential counselor on staff to help navigate social situations, teach them how to pay bills, etc while they live there and attend community college. We cannot afford the $84,000 annual cost. My question is this: has anyone thought of getting a group of our young men (ages 18-26?) together rent a house and hire a mentor that could just help them with social pragmatics, life skills. My son works part time and drives. However, he needs to learn how to navigate the world as a responsible adult. I know this is very grass-roots but there aren’t enough options out there. Any thoughts?

    • Mary Wallan

      Have you checked into Jewish Family and Child Services (in Waltham)? They have been quite active working with families of young adults, particularly those that are more independent, like your son. Good luck.

      • mumtothree

        Their program may work for young adults with Aspergers but they do not know that much about handling autism (the relative opposite ends of the spectrum). Even with congregate living, assuming that all the young men in the rental house Gina proposes are functioning independently with only “a” mentor (ratio?), it will still be expensive. They must have a decent job and/or parents to make up the difference. You could probably get it down to $50k or so. Supporting an autistic adult is like buying a year of private college, every year for the rest of his life. Aspergers probably less so. Gina’s son drives, most autistic people do not. (Holding my breath for another “utter nonsense” comment…)

  • Junky Jen

    I have a son who will be 26 this month and life has been extremely challenging. He was diagnosed as being on the autism spectrum in the early 90′s and the system has struggled to meet his needs. He sounds just like Michael. For us, every diagnosis has been NOS. He wants a more satisfying job and wants to live on his own but we worry that he will somehow blow it due to being socially inept or being taken advantage of. I took guardianship of him when he was 18 and he was very upset but I felt it was necessary. I SHARE guardianship so the burden doesn’t fall directly on me. He is in a residential program. It worries me about funding. I worry all the time. Much like this family, I have an older daughter who is an overachiever and she strives to help me oversee things. This helps, but I want her to finish college and don’t want to take anything away from her. I don’t worry yet (although I probably should) about what happens when I am gone, because I was a very young Mom. I have had to advocate for every bit of services he receives. I want to see him independent and productive and I would also love to see the state/federal government supporting that want in any way possible, knowing that in the long run he will be less of a burden to tax payers…and I want him to live a meaningful life with a special sense of purpose. This article REALLY helped me to understand the superhero thing! This family told our story down to a tee!

    • Peter Moscariello

      My wife and I can certainly empathize with your situation. Feel free to contact us – sometimes it helps just to talk and know you are not alone.
      Pete
      petemosc@verizon.net

  • Tricia Feldman Owens

    Tricia Owens-

    Important Warning:
    This message is intended only for

    My name is Tricia Owens. I am the mother of a 24 year old
    son with what used to be known as Asperger’s Syndrome( as of April in the new
    diagnostic manual all autistic disorders are considered Autism Spectrum
    Disorders including PDD nos). I am an RN and a mental health counselor. I
    work with several client’s on the spectrum and have a strength based
    optimistic/realistic approach to each individual reaching their life goals.
    I am writing as I would like to be a support to this family
    in whatever capacity it might be helpful. My son experienced a similar story to
    these young men and struggled greatly with depression, anxiety, being bullied..
    even considering suicide. With sometimes 24/7 support from myself and
    individuals over the years ( few) who proved helpful he was able to embrace his
    strengths and manage the issues that challenge him. This is the goal for all
    people regardless of what the particular areas of difficulty are.
    Unfortunately, for people on the autism spectrum there are not enough informed
    professionals who recognize the underlying potential within. My son has
    spoken to several student/parent bodies encouraging hope and resilient and most
    importantly self-acceptance. This past fall he was the keynote speaker at
    George Mason University’s Disability conference in front of 700 middle, high
    and college students with their supporters telling his story and inspiring
    others.

    If you have interest in speaking to me regarding my
    involvement , resources or further information I would welcome the opportunity.
    It is my passion to inform others about the gifts of these individuals, support
    their achievement of a meaningful life and educate the public in their
    strengths and the issues that create obstacles to their success.

    Thank you for writing and airing this story. I hope to play
    a role in the successful continuation of these young men’s growth.

    Tricia Owens RN, MA

    Important Warning:
    This message is intended only for

  • knt

    I know Mike personally, and I just want to say he is one of the most genuinely nice, and honest people I’ve ever met.

  • Mark Poutenis

    I know Jon a bit through an organization of Star Wars costumers called the 501st Legion, in particular the New England Garrison. Haven’t been involved much in the past 2-3 years, so I haven’t seen Jon in awhile. As a father with a 12 year old son with Asperger’s, I often find myself steering clear of stories like this unfortunately, strictly due to my own shortcomings with my own emotions, because all to often instead of inspiring, educating and preparing me, I just fall victim to the basest feelings of fear and sadness for my own son’s possible future … I will fully admit that that makes me weak and remiss in my duties of being best prepared to be my son’s strongest advocate. That said, Michael’s and Jon’s father is 100% correct: these young men ARE pioneers. Pioneers often have the thankless task for falling and paying the price to make the path safer and better for those that follow in their footsteps, and knowing Jon a bit and now feeling like I know something about Michael, I would like to thank them, because not only is their struggle reaping benefits for my 12 year old song, directly or indirectly, but their story is doing what I often don’t let other stories do: inspire. I would like to thank the entire Moscariello family for their candidness and bravery for sharing it with us.

    • Peter Moscariello

      Mark;
      Thank you for your heartfelt comments. The 501st NEG has been a godsend for Jon. He was thoroughly involved from age 18 to 25 (and not as much since then), but the kindness, compassion, and friendship that he received from 501st members was amazing.
      Jon does still attend some 501s events and stays current on the forum, so maybe we can find a way to meet in the near future.
      Pete

  • Peter Moscariello

    On behalf of my entire family (and other families like ours), I want to thank Martha Bebinger and WBUR for raising public awareness of the difficult and scary future to be faced by young adults with autism. Martha did a tremendous amount of research on her own, and was professional, thorough, persistent, and compassionate in the hours of interviews she conducted with my family members. Thank you, Martha, not just for the important story, but for being thoughtful and kind every step of the way.

    • Peter F.

      I also think you deserve thanks for sharing your story, not only with us in the blog, but in the wider community. The rest of us/them (sometimes we are them) need to hear this, learn this and understand that as we drive fast down the highway, there are all sorts of things happening, sometimes slowly, but happening along the side of the road.

  • http://www.myaspergers.net/ steveborgman

    Thanks so much for an article shedding light on what is just the tip of the iceberg. The generation of children who were diagnosed in the 80s and 90s are coming of age, and society can’t ignore them much longer. I believe the best hope is science, business, and successful Aspergians coming together to pave the way to helping all of us learn how to help adults with Aspergers have the lives they deserve, both relationally and careerwise.

    • Peter Moscariello

      Steve;
      Thanks for your thoughtful comments.
      Pete Moscariello

      • http://www.myaspergers.net/ steveborgman

        Peter, thank you. My son is also on the autism spectrum, so this subject is near and dear to my heart. And I work with young and older adults with Aspergers and high functioning autism in my practice, so I know how challenging it can be for them.

  • Scott Lentine

    Martha, here’s the link to my blog: scottlentine.wordpress.com
    Also, a few of my poems are here below:

    Acceptance of Autism

    Wanting to be free
    Wanting to be me
    Trying to make people see
    And accept the real me

    Some people think my voice is too loud
    And that my mannerisms strike them as being odd
    This perception of me by others keeps me feeling blue
    But there are plenty of struggles in life that I must get through

    I am determined to show my critics my true personality
    Hoping that people move away from their narrow-minded mentalities
    I want them to know that I am a bright young man
    Who is willing to take on as many challenges in life as I can

    I want to make new friends and create a new start
    I like to develop new relationships with an open heart
    I hope to be accepted for the person that I am
    So people can understand a true autistic man

    Fall in New England
    Fall is such a beautiful time of year
    There are plenty of sites to see here
    Leaves with bright colors orange, yellow, and red
    Signaling a change that the year is near the end

    But fall is also a time of new beginnings
    It is a time to start to learn new things
    A time to look at the world in a different way
    A time to learn new strategies to handle each day

    Let’s take this time of change
    And focus on new ways to think
    Let’s give individuals with challenges a new look and rearrange
    And find a common link

    Fall reminds us to turn over new leaves
    To think about starting new goals to achieve
    I call on the world to change perceptions
    And give all of us a new reception

    • Maurinemeleck

      good for you but if we just simply accept it–we willever end the epidemic. we can accept you and still aim the not accept the epidemic.

    • Martha Bebinger

      Lovely Scott – thanks so much!

  • Gerald F.

    For two years Michael saw a job counselor at a state agency for disabled adults, but he says everything they suggested was menial work.

    “I don’t want to sort through huge piles of batteries,” Michael says. “I want actual job satisfaction.”

    We can sympathize with these feelings. At the same time, menial work has to be done, people without Asperger’s do it, and it may be the only option for those who are, for any reason, not qualified for more satisfying work. One of the perceived disadvantages of the increasing prevalence of automation is that there is are fewer menial jobs for those who lack qualifications for higher level jobs.

    • Peter F.

      Hi Gerald–Our son, like a lot of kids on the spectrum, had real obsessions with trains and later other forms of transit (i.e. going on his computer and Google maps to check the runway configurations in, say, New Zealand), so he found, eventually, a job in aviation, sort of a grunt job (by some standards), but he loves going to work, and will soon be off Social Security (making Significant Gainful Activity, but still little enough to be the working poor). But that’s another issue.

      • Gerald F.

        Fantastic, Peter F. I expect this has done wonders for your son’s self esteem.

        • Peter F.

          Hi Gerald–It has done wonders for his self-esteem, but he still wants to hang with other kids, and particularly, with “typical” kids, who don’t have the same desire. So he’s working, but lonely. That’s the piece we still, and probably always will, need to address. Thanks for your interest and support.

  • Brian Gordon

    I write this to hopefully provide some hope to parents like Peter F. It certainly is true that therapists do move on over time, but in this particular regard I am (and others I know who direct their passion to this particular world of individuals) are outliers this generally consistent rule. So many individuals and their families are in touch with me (and vice versa) all the time – from as far back as 10 years ago when I first began this chapter of my life when, believe it or not, I transitioned from being a professional stand-up comic.

    Perhaps it has much to do with my inability to stray from keeping the work relationship-centered; and that means always respecting the individual nature of each person I meet. If I think I have a person’s “number” then it is certain that I will be of absolutely no use that person at all. There is treasure. To me, there is no success unless if I am learning at least as much as I am teaching. I could go on and on here.

    The Moscariellos saved my life!

    Here is an article I had published a few years ago that explains exactly how it all happened: http://bsgsociallearning.com/about/published-articles/articles-by-bsg/article-iata-journal/

    • Peter F.

      Hi Brian–I absolutely did not mean to suggest that you were, in the most crass way, “only in it for the money”. We had wonderful relations with therapists and teachers for our son, some lasting 20+years. I know that people who do this work give a piece of themselves to their client/patient/student, and that, in time, the relationship moves on. The memory, and the contact lasts.

    • Peter Moscariello

      Brian’s brilliant work with my sons was certainly mentioned in Martha’s article, but time and space would not allow description of the truly life-saving impact Brian had, and continues to have, on my entire family. The article accurately paints our family plight as challenging and even heart-breaking, but our greatest fortune has been to have Brian Gordon in our life.

  • Catherine

    I would encourage employers, families, students to read:
    Different . . . Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD Paperback
    by Temple Grandin (Author), Tony Attwood (Foreword) 2012
    This book is a compilation of success stories from adults with autism and Asperger’s Syndrome. Each shares what helped them during their childhood and young lives that made them the independant adults they are today.
    Description on Amazon.com:
    One of the most important missions Temple Grandin has is making sure people with autism and Asperger’s make something of their lives. As Temple says quite bluntly, “Being on Social Security is NOT a job choice.” These unique individuals often have great potential in parts of their minds that neurotypicals never even start to tap. This needs to be shared with the world. However, in order to share their hidden genius, they have to overcome many social obstacles. The point of this groundbreaking work is – it is possible, and it is WORTH it. Let these crusaders, handpicked by Temple herself, show how it can be done. Let this work by Dr. Temple Grandin inspire you to your true potential. You will soon see why it means so much to her.

  • CircusMcGurkus

    It may be unconventional – and not for everyone – but it’s possible that a service dog specially trained to assist people with autism could help with anxiety. Please contact NEADS http://www.neads.org/ 978-422-9064. They train dogs for children with autism and may be of assistance in pairing dogs with adults with autism.
    Dogs are non-judgmental and never get tired of hearing people talk. They are wonderful ice-breakers. It is very hard to share life with a dog and not laugh out loud – or at least smile – every day. It is a responsibility but sometimes having that responsibility is a welcome part of being an adult.

    (978) 422-9064
    (978) 422-9064

    • Peter Moscariello

      My brother, who has two children on the spectrum, just got a specifically trained service dog – for the exact reasons your described. So far, it is working out well.

      • CircusMcGurkus

        That is fantastic news! Dogs have a special magic. So glad to hear that your brother and nephews are benefiting from that unique bond and assistance. When it works out, it is remarkable!

  • Lawrence

    Where is the rest of the reporting? Is this site owned by the pharmaceutical companies?

    As Anne says, the rate of Autism was 1 person in 10,000.
    Now that Big Pharma had its hand in manipulating the definition, suddenly we have
    1 in 68???

    A big windfall of billions to be reaped by selling drugs even though we know that drugs don’t treat this condition.

    Where is the rest of the reporting? Where is the rest of the story?

    • Deborah Vlock

      This story has many angles. Yours is one of them, for sure. But not the only one. This reporting focused on a different one….and no single essay can cover them all.

      • Lawrence

        Yes, that is true. I wonder how long we have to wait until we get a story on how the normal values of a variety of conditions change to make get Americans on potentially dangerous drugs.

        Diane Sawyer and a host of other reputable news outlets are calling this trend disturbing and have done a number of stories.

  • Maurinemeleck

    The future will not only be bad for all those nwith ASD, but the future will be pretty dim for all Americans. They are going to have to foot the bill for hundreds of thousands of young adults who will never be able to hold a job or take care of themselves. And as this man-made epidemic of autism grows larger and only parents seem to really want to stop it-the consequences will be even greater. Let’s remember that autism is not a mental disorder, but a neurodevelopmental and metabolic disorder affecting every organ in the body. The cause is man-made and mainly environmental.

    • bpatient

      Of course it’s clear that at least most of what you term an “epidemic” is simply an increase in the diagnosed prevalence of ASD due to already-identified factors such as changing diagnostic criteria, increased awareness, and diagnostic accretion–one-fourth of the apparent increase is due to simply affixing an additional “ASD” label to children who previously would have been diagnosed as simply mentally impaired.

      However, it is possible that there has been a real increase in the actual incidence of ASD due to environmental factors. Dr. Tom Insel, the Director of the National Institute of Mental Health, recently testified before the House Committee on Oversight and Government Reform that in addition to the overwhelming evidence for a genetic component to ASD, “The good news is that both neuroscience and genomics together are actually helping us to begin to pinpoint where the environment must be is taking its toll, and all the evidence right now points to midgestation, second trimester.”

      ASD begins in the womb, and there’s no real evidence to suggest that that has not been true for generations. Anyone interested in ASD should support efforts to understand the prenatal factors that might be leading to a true increase in the incidence of the disorder.

      • Maurinemeleck

        Out now Lou Conte’s The Vaccine War. Out Sept-Oct. The Big Autism Lie- by Anne Dachel(sure to be a best seller-I have already read it) Eat your heart out bepatient.

      • Maurinemeleck

        Of course it’s clearly an epidemic and has little to do with better diagnosing. Utter nonsense you write. It won’t hold.

    • http://www.pwheartsong.blogspot.com Michelle Smith

      Man-made and environmental??? Please explain to me what I did wrong during pregnancy or their early childhood, that effected both of my children this way….I have a 9 year old just diagnosed with Autism level 1 (Asperger’s) and a 7 year old diagnosed 3 years ago with ASD. My 7 year old is more non verbal then verbal. I would love to know what terrible thing I did to cause this to happen!

      • Maurinemeleck

        Michelle Smith don’t blame yourself. Hundreds of thousands of us did the same thing. We did what gov’t health officials and doctors told us to do. We vaccinated our children because we were told vaccines were safe. They are not. Some good reads include: The Age of Autism-Olmsted and Blaxill, The Vaccine War(new) Lou Conte. Out in Sept-Oct.–The Big Autism Lie-Anne Dachel..

        • http://www.pwheartsong.blogspot.com Michelle Smith

          Sorry Maurinemeleck, but I don’t agree. As a RN and a Public Health Nurse for many years, I have seen the effects of the many of the diseases that are currently vaccinated against including the results of the Polio disease that my own Mother contracted when she was 9 that left her paralyzed from the waist down. If as some say the vaccines are to blame then the rate of Austim would be 100%. All of the children vaccinated would be Autistic. I don’t see anyone being able to claim that stat. Sorry don’t mean to be rude but I don’t buy it.

          • Maurinemeleck

            Me neither to be rude Michelle Smith-but you do not understand autism-the children that get the disease(and it is a disease of the immune system in particular) do have a genetic predisposition to being unable to excrete the massive amounts of toxins generated by vaccines at one time. As we say, the predisposition is the gun, the vaccines the trigger. it has to do with our bodies methalation systems. Generally genetically too little glutathione in their bodies. BTW-I too had polio and totally recovered. At its worst it affected 1 in 3,000 people who actually became sick from polio. Autism now affects 1 in 46 boys according to the CDC. My sisters, friends, millions of people had measles, chicken pox etc as children. I don’t know one soul who died from any of them.
            Please do read some of the books I recommended and go to Age of Autism and read. There is so much to lear n about vaccines and the damage they can do. Best of luck to you

          • http://www.pwheartsong.blogspot.com Michelle Smith

            Ok I will only make one more post I promise, Is it man-made and environmental or is it genetic???? Your saying both…but if you are correct and it is related to the predispositon of a person genetically..then if we know this, why is there not a test of the mutation that we can take before giving before giving the vaccine. Congratulations BTW on not having long term effects of the polio..
            And there are souls who have died from all of the diseases that are vaccinated against (whether you know them or not)….you might find it interesting to do some research on the symptoms, after effects and morality rates of diseases in the 19th and early 20th centuries. Diptheria had a 50% fatality rate before vaccinations were available and Tetanus had a 91% fatality rate in 1927. That is only a couple of the many diseases that vaccinations are given for. I understand the need to blame something, anything for the “epidemic” of autism. I will take time to read the books that you recommended because I know as a medical professional how important it is to be informed on the leading research..Thanks for pointing out to me that I don’t have a good grasp on the science of the disease…(too busy trying to deal with its symptoms I guess) IHowever I don’t think that anyone, including the scientific or medical communities that have a good understanding of it yet…

          • Maurinemeleck

            I have read a lot about diseases in the past. I believe that the majority were more due back then(and the spread and death rates) were due more to poor sanitation and especially a poor water system that spread disease like crazy. BTW most of us are not anti-vaccine–but safe vaccines and we do not believe they are safe and we think there are too many unnecessary one and they are giving too many at a time . I have also seen charts that many of the diseases were on their way out before the particular vaccine was developed and used. I also believe that the polio epidemic was a direct result of the eginning of the use of massive pesticides. Read the Age of Autism book. BTW I have recovered one of my grandchildren with ASD with bio-meds. If you want any info or help–let me know. b est wishes

          • mumtothree

            Autism is a cluster of symptoms, which in many cases cannot be linked to either a genetic defect or so-called environmental factors such as thimerosol in vaccines, which has not been used in many, many years. Dr. Margaret Bauman’s research at MGH showed that the onset of observable symptoms often coincides with vaccination. This does not imply cause and effect, which many would like to believe. I trust science. I would encourage every to start with the CDC fact sheet:

            http://www.cdc.gov/ncbddd/autism/facts.html

          • Maurinemeleck

            Utter nonsense. Childhood vaccines are made with thimerosal(except the live viruses) and then the mercury is so called weeded out, yet trace amounts always remain. The flu vaccine in multi vials contains 25 micrograms of thimerosal and last year 57 percent of the US population received the flu vaccine. It is recommended for pregnant women and infants over 6 months of age. Thimerosal in vaccines(that is large amoiunts) of infant and young children were still on shelves and being used as late as 2004.(the CDC said it was ok to use vials that were already made in 2000) and doctors did just that. I would encourage you to read the 5 new books out or coming out by Oct. 1st on the dangers of vaccines and how mercury can cause autism. And yes, the genetic link has been disclosed–children with a genetic predisposition to being unable to excrete large loads of toxins(mercury, aluminum in vaccines for example) quickly enough will be the most vulnerable to toxic vaccines. Only go to the CDC link if you are a pharma whore.

    • AZbyNM

      actually natural occurring, but strongly man purpentarted, just like so many diseases, disabilities, deformities,etc.

  • Deborah Vlock

    Thank you so much for this piece! My husband and I listened with very mixed emotions this morning. Our son is now fourteen, and has diagnoses of Apserger’s as well as anxiety and depressive disorders. Public school was a nightmare for him (and us). It took three out-of-of-district placements (and about 6 psychiatric hospitalizations, between ages 9 and 13) to find the place in which we believe he will find success–a residential school with a big emphasis on life skills, including managing higher education and/or employment. We could NEVER have done this for him ourselves. The heartbreak of seeing him only every other weekend is more than balanced by watching his miraculous forward momentum, and by the healing our family of four has finally begun. But, as every autism family knows, you never stop worrying. Our fingers are crossed that he will learn the necessary skills for living a productive, satisfying, and — hopefully — independent life, after he ages out of the system. And that our local school district continues to support him in this pricey educational journey!!

    • Lawrence

      Sounds like the residential school with an emphasis on life skills is working versus the anti-anxiety meds and anti-depressants and the host of other medications he must have been prescribed in the psychiatric hospitals.

      • Deborah Vlock

        Actually, Lawrence, they work in concert. I do agree that there are some BIG problems with big pharma’s control on the market — just as there are with big agra and every other corporate “big” in our country. However, I must say that sometimes pharmacology saves lives. My son is still on psych meds. We believe they kept him alive while we figured out, along with a host of clinicians, educators, family and friends, what else could be done for him. We do not believe — yet — that he’s ready to go off them. We hope someday he can. Unless someone has parented a child with severe mental illness, or lived with it themselves, I think it is hard to imagine making the choice to medicate. But sometimes it makes urgent sense — even if the practices of pharma companies do not . THAT, I think, is the real issue here…and it deserves to be tackled.

        Have at it, commenters!

        • Lawrence

          Yes, your story is a good reminder that some children need these drugs I agree that many children may need meds, but many are abused. It’s the abuse that needs to be looked at, and it’s rampant.

          And do you notice all of these shootings, in schools, army bases and malls and in the home? Note that the vast majority are from those on medications? Which is consistent with the adverse effects listed on the label?

        • Tricia Feldman Owens

          I agree with you that the meds are necessary as a part of the support. For some individuals the anxiety, depression and anger that being on the spectrum triggers needs to be lowered in order to be able to do the work of reaching life goals. Without the medication it may be that the only focus will be on behavior management and safety.

    • Martha Bebinger

      Thanks for the note Deborah. What a moving story you have too. Best of luck with everything.

  • AZbyNM

    I suffer dearly from what was formerly known as PDD-NOS/asperger syndrome. With so many cases of autism on the rise, along with obesity,cancers, diabetes, leukemia, & what not,especially since the early 1980s, along with all the crap & additives the food companies have been adding into our food supply,such as hormones, antibiotics for factory farmed animals, the addition of pink slime, & more recently GMO plants as well. Also the pro-life attitudes of those doctors & politicians that demand life to be preserved @ all cost, often passed on to the individual,even as the individual may be chronically sick or disabled, Isn’t not any wonder therefore that a dysgenic trend among the populations of the developed has been emerging in recent decades? I mean with so many people in the developed world or even middle income developing nations having so many children with their bodies being sick as they are, I feel our species has reached a breaking point in so far as its long term survival_http://t.co/GzjuImgNPa along with too many people competing to get declining resources http://en.wikipedia.org/wiki/Hubbert_peak_theory#Hubbert_peaks The universe has only so many finite resources,combined that with unrestained population growth & also so many disabled people taking up 4 times on average than the normal person, I believe the time for socio-ecological collaspe is innterment, not unless we sstart to learn to live sustainably & only allow healthy people to bred, & that no more than 2 per generation.

  • Anne Dachel

    Experts now tell us that 85 percent of autistic adults are unemployed. It’s
    important to note that the rate of one in 68 is based on studies of eight year
    olds, not eighty year olds. No one has ever shown us a comparable rate among
    adults–especially adults with severe autism whose symptoms are easily
    recognized. It also should be pointed out that the rate for just boys is much
    higher: one in every 42.

    This is what has happened to the autism
    rate in this country.

    1980: 1 in 10,000

    In 1994 the definition of autism was
    broaden and the numbers increased dramatically.

    1995: 1 in 500

    2001: 1 in 250

    2004: 1 in 166

    2007: 1 in 150

    2009: 1 in 110

    2012: 1 in 88

    2014: 1 in 68

    Each time the rate was
    updated health officials automatically announced that it was no real
    increase–just better diagnosing/a broader definition. The definition was
    changed 20 years ago. Why does the rate continue to
    increase?

    No matter how bad the
    numbers get, no official can explain it and no one is ever worried.

    Anne Dachel, Media
    editor: Age of Autism

    • Lawrence

      Because although there are no drugs to treat this condition, Big Pharma muscles it’s way into the act, and has the FDA which is practically owned by Big Pharma, approves drugs, making the drug companies billions.

      Broadening the definition allows more to be labeled with this disorder and they can sell more drugs to more people. It’s insane, but did you really have to ask? The same is true when they changed the normal value for cholesterol, ADD, melancholy, etc.. It’s all about money.

      READ:

      Medicines for treating the three core symptoms of autism –
      communication difficulties, social challenges and repetitive behavior –
      have long represented a huge area of unmet need. Unfortunately, few
      drugs on the market today effectively relieve these symptoms and none of
      the options most often prescribed by practitioners work well for every
      individual.
      In fact, while the Food and Drug Administration (FDA) has approved
      two drugs for treating irritability associated with the autism
      (risperidone and aripiprazole), i

    • bpatient

      “No one has ever shown us a comparable rate [of ASD] among
      adults”

      No, that’s not true.

      The recent International Meeting for Autism Research included the presentation of several studies that show that ASD among adults is no longer being ignored. Study subjects ranged in age up to 79 years.

      Unfortunately, few previous studies included older people with ASD. The authors of an epidemiological study in the UK concluded that the prevalence of ASD among adults living in the community is comparable to the prevalence of ASD among children. That study included included “face-to-face clinical assessment of current behavior consistent with a diagnosis of ASD . . . [to] evaluate communication, reciprocal social interaction, creativity, imagination, and stereotyped and restricted interests.” The authors determined “that the overall prevalence of ASD in the English population of individuals 16 years or older was 9.8 per 1000 population.”

      The authors noted that “adults with ASD are socially disadvantaged, at a lower educational level, less able intellectually, and apparently unrecognized by mental health services.” They concluded: “The lack of an association with age is consistent with there having been no increase in prevalence [of ASD] and with its causes being temporally constant.”

    • Tricia Feldman Owens

      The research is fairly young in this area as with all other neurological conditions including Alzheimer’s disease. It is important to educate ourselves on the science of ASD so that we can understand and educate others. Remember before 1994 there was no diagnosis of Asperger’s at all.

  • mumtothree

    I would like to request an additional segment on those who are more impaired. A large percentage of people with autism are also developmentally disabled (40-75%). This morning’s story, while important, may lead people to think that people with ASD are challenged by social interactions but intellectually fine. Parents of adults having what used to be called simply “autism,” in the absence of high medical needs, do not have much hope of receiving support from the Mass. Dept. of Developmental Services before one or both parents are dead. The people who were involved in the Boulet lawsuit got services, people who are now “Turning 22″ are getting services, but developmentally disabled autistic adults in their 30′s and late 20′s have been ignored.

    • Martha Bebinger

      Hi mumtothree – nice to hear from you as always and thanks for this comment. Do you have a story you’d like to share?

      • mumtothree

        I do, though too lengthy to go into in this forum.

    • http://www.jebbcenter.org William Jebb

      Please visit our website to learn what we are trying to do to help solve the problem- http://www.jebbcenter.org

    • Tricia Feldman Owens

      well said. I have a nephew who is 28 and nonverbal. Fortunately for him his parents are in a position to support his independent living along with the state of New York. This, sadly , is the exception rather than the rule.

  • Peter F.

    I’m the father of a 24 year old with Asperger’s who is working full time and living independently (with a roommate). While we are very happy for his abilities, we see his frustration with how things often don’t work out socially, and we just keep trying to redirect him to the friends he does have, rather than have him dwell on the vast majority of the world that continues to pass him by. For these young men, I’d suggest connecting with the Asperger’s Association of NE, which sets up social opportunities with other Aspies. While Brian Gordon worked wonders (and I’m sure he did), at some point, therapists move on, and we all call on the lasting connections of friends and family.

    • ontheball_offthewall

      Can’t say enough good things about AANE (asperger’s association of new england). If you’re reading this article and need some assistance, please contact them

      • Deborah Vlock

        I third the motion. AANE is a wonderful organization!

        • AnettaBiolettimso

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    • http://artistswithautismunite.webs.com/ Cynthia Drucker

      You mentioned that your son writes well. Would he like to contribute to a new book for autism poetry,prose and short stories? http://uncommonminds.webs.com/