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Archive for the ‘Autism Adults’ Category

Beth A. Malow, MD, MS

Professor of Neurology and Pediatrics, Burry Chair in Cognitive Childhood Development, Vanderbilt University, Nashville, TN

            Vanderbilt Kennedy Center for Human Development, Nashville TN

Sleep is an essential component of a healthy life, like food and oxygen.  When we don’t sleep well, we feel irritable and have difficulty concentrating. With this in mind, imagine how a child on the autism spectrum feels and behaves without sleep (and how their sleep-deprived caregivers feel)!

Given how common sleep problems are, and how profoundly they affect children and their families,  it is timely to consider what we already know and what the future holds in our understanding of sleep in autism spectrum disorders (ASD).

What we’ve learned so far:  Sleep problems are common in children with ASD,  have many causes, and affect child and family functioning.  

Sleep problems are common in children with autism spectrum disorders (ASD) — ranging from 50-80% (Couturier et al., 2005; Krakowiak et al., 2008; Souders et al., 2009; Goldman et al. 2011), with similar rates across all ages and cognitive levels.  Insomnia, defined as difficulty falling asleep or staying asleep, is the most common sleep problem. Causes (Reynolds and Malow, 2011) range from medical conditions (e.g., gastrointestinal disorders, seizures, sleep apnea, attention deficit disorder, anxiety) and the medications used to treat these conditions (e.g., stimulants, antidepressants) to behavioral factors unique to the child with autism (for example, sensory sensitivities, difficulty transitioning to bedtime activities). Children, regardless of language abilities, may not understand parents expectations about sleep. Parents, in turn, may be too overwhelmed by other priorities and stressors to put a sleep plan in place. Proper identification of the causes of sleep difficulties in children with ASD is critical to successful treatment.

Behavioral and pharmacological treatments that improve sleep positively affect daytime functioning in the child and family (as reviewed in Malow et al., 2012) and may minimize the need for medications that target behavioral symptoms. For example, in 80 children receiving sleep education delivered by their parents (Malow et al., 2013), improvements in anxiety, attention, repetitive behavior, pediatric quality of life, and parenting sense of competence were also observed. While improving sleep does not necessarily change the core features of ASD, addressing  sleep concerns may ameliorate co-occurring medical conditions such as epilepsy or anxiety.  A well-rested child may also be more engaged in therapies that improve social interactions, and his well-rested parents may be empowered to advocate more effectively for his needs.

What we need to learn: What therapies for sleep are effective? Can we predict which treatments will work for subgroups of children?

We still have much more to learn about which therapies are effective for sleep in children with ASD. In particular, we need to understand the impact of treating co-occurring medical and psychiatric conditions (e.g., gastrointestinal disorders, anxiety) on sleep-onset and sleep-maintenance insomnia. For example, insomnia, anxiety, and GI disturbances may coexist in the same child, but whether one causes or contributes to the other coexisting conditions is unresolved. An alternative possibility is that insomnia, anxiety, and GI disturbance share an underlying mechanism. One possible mechanism may be autonomic dysfunction (Kushki, 2013), with sympathetic hyperarousal and parasympathetic underarousal.

While behavioral treatments for sleep have shown promise in ASD and other neurodevelopmental disorders (Malow et al., 2013; Weiskop et al., 2005 and others reviewed in Vriend, 2011), determining  subgroups of children who are most responsive to these therapies are needed. For example, children with short sleep duration and frequent night wakings (in whom medical causes of sleep disturbance have been excluded), or those with limited verbal skills, may have a differing treatment response to behavioral interventions than children with sleep onset delay. This differing response may result from biological causes, or alternatively, a poorer response to the intervention. In those requiring medications, we need to determine which medicines are safe and effective for a variety of sleep problems (sleep onset delay, night wakings). Supplemental melatonin has been studied to a greater extent than any other medication for sleep in ASD, but large well-controlled studies have been limited (Rossignol, 2011). Genetic factors, including those related to melatonin synthesis, may also be important (Melke, 2008) in determining which child may respond to a specific therapy.

Another subgroup of  individuals with ASDs worthy of study are adolescents and young adults. My colleagues at Vanderbilt are studying sleep patterns this population at baseline (Dr. Suzanne Goldman, funding from Autism Speaks), and with behavioral treatment (Dr. Whitney Loring, funding from Organization for Autism Research).

The area of sleep and autism is ripe for continued research, in terms of causes, treatments, and overlap with many other areas, ranging from medical co-occurring conditions to genetic and other biological markers to treatment trials. Being vigilant (pun intended) to the role of sleep in autism research has high potential to advance our knowledge of autism subtypes as well as our toolbox for real world treatments that impact people with ASD and their families.

 

References

Couturier JL, Speechley KN, Steele M, Norman R, Stringer B, Nicolson R. (2005) Parental perception of sleep problems in children of normal intelligence with pervasive developmental disorders: prevalence, severity, and pattern. J Am Acad Child Adolesc Psychiatry 44: 815-822.

Goldman SE, Surdyka K, Cuevas R, Adkins K, Wang L, Malow BA. (2009) Defining the sleep phenotype in children with autism. Dev Neuropsychol. 34(5), 560-73.

Kushki A, Drumm E, Pla Mobarak MTanel NDupuis AChau T, Anagnostou E. Investigating the autonomic nervous system response to anxiety in children with autism spectrum disorders. PLoS One. 2013;8(4):e59730. doi: 10.1371/journal.pone.0059730. Epub 2013 Apr 5.

Krakowiak P, Goodlin-Jones B, Hertz-Picciotto I, Croen LA, Hansen RL. (2008) Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: a population-based study. J Sleep Res. 17(2):197-206.

Malow BA, Byars K, Johnson K, Weiss S, Bernal P, Goldman SE, Panzer R, Coury D, Glaze DG. A practice pathway for the identification, evaluation and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics. 2012;130 Suppl 2:S106-24.

Malow BA, Adkins KW, Reynolds A, Weiss SK, Loh A, Fawkes D, Katz T, Goldman SE, Madduri N, Hundley R, Clemons T. Parent-Based Sleep Education for Children with Autism Spectrum Disorders. J Autism Dev Disord. 2013 Jun 11.

Melke J, Goubran Botros H, Chaste P, Betancur C, Nygren G, Anckarsater H, Rastam M, Stahlberg O, Gillberg IC, Delorme R, Chabane N, Mouren-Simeoni MC, Fauchereau F, Durand C M, Chevalier F, Drouot X, Collet C, Launay JM, Leboyer M, Gillberg C, Bourgeron T. Abnormal melatonin synthesis in autism spectrum disorders. Mol Psychiatry 2008; 13(1):90-98

Reynolds AM, Malow BA. Sleep in Children with Autism Spectrum Disorders. In: Owens J, Mindell JA, Eds. Pediatric Clinics of North America 2011; 58(3):685-98.

Rossignol D, Frye R. Melatonin in autism spectrum disorders: a systemic review and meta-analysis. Developmental Medicine & Child Neurology 2011; 53(9), 783-792.

Souders MC, Mason TB, Valladares O, et al. Sleep behaviors and sleep quality in children with autism spectrum disorders.  SLEEP 2009;32:1566-1578.

Vriend, J. L., Corkum, P. V., Moon, E. C., & Smith, I. M. (2011). Behavioral interventions for sleep problems in children with autism spectrum disorders: Current findings and future directions. Journal of Pediatric Psychology, 36(9), 1017–1029.

Weiskop S, Richdale A, Matthews J. Behavioural treatment to reduce sleep problems in children with autism or fragile X syndrome. Dev Med Child Neurol. 2005;47(2):94-104.

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by Jason Ross

Jason Ross is an Autistic adult working for the Autism Science Foundation. He has appeared on PBS’ “This Emotional Life” with Ami Klin. Jason blogs about neurodiversity, autistic rights, fiction, poetry, and artwork at www.drivemomcrazy.com.

As an adult with autism, I am encouraging Autistic people to step up and share their voices as we continue this journey to build a better community of inclusion. Part of building that community is developing and improving services for adults with autism, which is the ultimate goal of ASF and UJA’s Adult with ASD survey. Hopefully this survey will bring us closer to autism acceptance.

I decided to join this initiative and help Autism Science Foundation with this research project because many of my Autistic friends that I have spoken with either lack services or have none at all. Autistic adults need improved services to lead easier and more fulfilled lives.
We need improved services because:

  1. Services can build our strengths- we can use our strengths to build our lives!
  2. Services can help us get jobs- Autistics need jobs too. Better services will better prepare us for employment in the future!
  3. Services can help us communicate- we need improved services in order to communicate our thoughts and feelings especially since some people think we don’t have feelings or thoughts of our own!
  4. Services can help us live inclusively in society- although social skills classes are important, most classes don’t include everything we need to know.

Autistic people face many barriers in society. Please complete the survey to help lift them. You may be eligible for the survey if you are an adult with autism or a parent or caregiver of an adult with autism. If you aren’t eligible, recommend this survey to someone who can take it.  A barrier we have always faced is not being included in helping with research that affects us. The survey being administered now will help researchers understand what works best for us and what does not. Help us help researchers do the right thing. Be heard.

Please email me at jross@autismsciencefoundation.org if you have any questions.

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Matthew de La Tour is a talented artist with autism who has been producing art since he was a child. His technique involves applying molten glue (from a hot glue gun, for instance) to a surface, painting the surface, and peeling off the glue to reveal a work of art that he calls an ‘autistic expression’.

When we asked what motivated him to create, he told us that creating art allows him to channel his emotions into something and overcome the challenges and hostility he faces in life. The world he creates through his art, he explained, is his own–with his own standards.

Matthew wants to share his art and techniques in order to help and inspire other people on the spectrum. To this end, he wrote the following post outlining each step of his method. Stunning photographs of his work are also shown below. 

Instructions:

Step 1. Using a glue gun and mini glue sticks 4″ x .27″ put glue sticks in gun and apply glue to surface- example would be an art canvas.

Step2. Start with drawing shapes- like circles- triangles- and squares to get a feel of how the molten glue moves when you pull the glue gun trigger- remember molten glue will be very hot.

Step 3. Allow the glue to cool to your surface- then using spray paint in a vented area… or acrylic paint- lightly cover the glue on the surface- most paints dries in minutes.

Step 4. After paint is dry- pull the glue gently off the canvas and allow your creation to come forth. You can repeat the process or add more paint. You can gradually start making complex designs and create a technique of your own.

Molten glue can be used to rebind old books and create new covers for those books. Other examples of recommended surfaces are: bottles, picture frames, high-heeled shoes and anything you can imagine. Remember nothing is impossible you have the ability- just imagine.

If you have questions for Matthew, you can reach him at gluedelatour@yahoo.com.

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Today we announced the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. We are delighted to partner with UJA-Federation of New York and the Interactive Autism Network on this initiative. Read more below to see whether you are eligible to participate in the survey!

“The goal of this project is to identify the drivers of fulfillment and success for autistic adults in the areas of employment, leisure activities, and spirituality,” said Deborah Hilibrand, a member of UJA-Federation of New York’s Autism Task Force. “We will then use this information to help UJA-Federation and other agencies provide these critical activities by providing financial support for projects that deliver these services.”

“We also want to use the data to enhance public awareness about the critical issues facing adults with autism and their families by broadly disseminating the results of this survey,” said Alison Singer, president  the Autism Science Foundation.

The free survey is designed to be completed entirely online. Surveys must be completed by Friday, November 30, 2012. All responses and data collected will be kept anonymous and confidential. Participants in this survey do not have to be Jewish or receive services from UJA-Federation, and people of all faiths are welcome.

Eligibility to participate in the UJA-Federation Adult with ASD Survey includes:

  • Residency in the five boroughs of New York City, Long Island, or Westchester.
  • An adult with ASD who is independent and is not under anyone’s legal guardianship.
  • The parent of an independent adult with ASD (for example, one’s adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions).
  • The legally authorized representative of a dependent adult with ASD (for example, you may have legal guardianship or medical power of attorney for the adult with ASD).

If you are a member of one of these three groups we invite you to participate by joining the Interactive Autism Network  – the world’s largest online autism research project — and then completing the “UJA-Federation Adult with ASD Survey.”

Additional funding for this project was provided by the Hilibrand Foundation and the FAR Fund.

To begin the survey, click on this link:  http://bit.ly/ORf7d5

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Paul Morris & his psychiatrist Dr. Andres Martin during the Science & Sandwiches event.

Paul Morris, an adult with autism, gave a compelling and inspiring account of his journey from childhood to adulthood at ASF’s Science & Sandwiches event last night. Paul asked his psychiatrist, Dr. Andres Martin, Psychiatrist at the Yale Child Study Center, to help him share his story. In a candid discussion, Paul asked Dr. Martin a series of questions about what he was like when he first became his patient, and how he was different as an adult.

During the discussion, Paul explained that he used to be non-verbal and faced significant challenges as a result of his autism. As he grew older, his determination to achieve independence and lead a life comparable to his neurotypical siblings motivated him to become the self-sufficient, happily employed member of society he is today. Remarking on Paul’s growth, tenacity, confidence, and passion for autism advocacy, Dr. Martin called Paul a source of inspiration for families affected by autism.

This is a transcript of the speech Paul gave at the event:

Hi,

Paul Morris

My name is Paul Morris. Many of you know me from the past. Some of you worked with me. I was non-verbal until age 5. I had to be taught how to speak, how to listen and how to think. The years were hard. Sometimes I just didn’t understand. But look at me now. I graduated from the College Internship Program at the Berkshire Center in Lee, MA.

I have always wanted to do public speaking at various colleges for people who major in psychology and special education. I want to talk about my life with autism.

Autism is a genetic disorder that affects the brain and communication. When I was a little boy I did not know that I was different. When I became an older person, I wanted to do my own things, like hang out with friends, like my brothers Jesse, and Tyler, and my sister Sabrina. I did not know how to hang out with friends.

My parents wanted me to learn how to speak and communicate. It is not only about words, it is about behavior. It took me a long time to learn how to socialize with people. I am still learning what that means.

When I went to Middle School, the kids didn’t understand me. I think they were afraid of me because of my autism. It also took a long time for people to know how to socialize with someone like me. I didn’t understand when kids told me to do wrongdoings. Sometimes kids are rude.

Then there were the kids that were nice to me. They were kind and they sat next to me in the cafeteria but I did not go to recess because they said it wasn’t good for me. Today, I would suggest that special ed kids should go to recess and have an aide help them.

I learned that language is not only about speaking. It is about relationships. I was taught relationship development intervention. It was very hard for me. Eye contact was hard for me to do in the beginning but “Look me in the eye”, I am good at it now.

I met Dr. Martin in 1999. I couldn’t control myself. I would explode. I would obsess. I would cry in pain. He tried to help me with medicine.

The best things about High School were small classes in English and Math. I also enjoyed lunch groups in the guidance office. We made a friendship blanket and everyone signed it. Some of those kids were very nice to me and still contact me by phone, email and Facebook.

I started the College Internship Program in Lee, Massachusetts on July 3, 2006. The program was called ASPIRE. I looked up the definition of aspire. It means to dream, to pursue, to try, to wish, to struggle. I struggled in the beginning. Living on my own, I learned about hygiene, cooking, cleaning, how to get a job, self-awareness, taking care of money and figure out my problems.

The guests at the Science & Sandwiches event.

Classes like theory of mind, realizing about how others talk to you and hidden curriculum were challenging. The C-STEP (Career Skills Training Employment Program) is very important for people who don’t go to college. I took classes in Self -awareness, critical thinking, English, Math, Working with people, Office procedures, Succeeding in the world of work, Business correspondence, and Internships. My best internship was at the Norman Rockwell Museum doing data entry and mailings to colleges for Art History Programs.

Advising sessions were very important at CIP. We did self -assessment forms. I rated my performance every week, and my advisor did it too. The ratings are listed as Under-performing, Average, Honors & Mentor.

One day freshman year my parents invited me to a Brewers/Mets game. My Mom gave me an option A: Do you want to go and find a way to get yourself home? Or B: Do you want to stay at school?   I picked A. I researched Peter Pan Bus on the Internet and learned that I could take a bus from Lee, Massachusetts to Danbury, Connecticut. I bought the ticket and traveled by myself. When I stepped off the bus I said “The mentor has arrived!”

When I graduated in May, I was on Mentor status for 26 weeks in a row. At our graduation convocation ceremony I won the award for Most Improved Student. I also earned a certificate for 44 hours of community service, because I performed in a puppet show for children and sent toiletries to Africa. My favorite award, which I won 3 years in a row, was for Recreational Excellence. I never missed a meeting on Monday nights, where I made suggestions for weekend activities. I researched directions on map quest, how much it cost and assisted the Residential Coordinator in planning. I also was an officer in student senate.

It has been a very long way for me. I have worked very hard to achieve.

I now live in New York. I work at New York Medical College as a human resource assistant. I do data entry, scanning, shredding, copying, filing, and mailings. My supervisor, Tom is my mentor and friend. I wrote a letter to President Obama in 2009:

Dear President Obama,

My name is Paul Morris and I am a 21 year old guy who is high-functioning autistic. I was non-verbal until the age of 5. Now that I am looking for work and living with roommates, I am worried about my life. It’s going poorly for autistic adults because the funding is over. I want you to create programs for autism spectrum disorders. Today, you donate lots of money to autism.

From, Paul Morris

I want new interventions to help with autistic people. I want good education for them to learn. I want jobs and help with living. I want to do great things.

Thank you for listening.

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Extraordinary Ventures is a North Carolina-based nonprofit that provides employment and social opportunities for people with developmental disabilities. Recently, the Autism Science Foundation ordered holiday oatmeal jars from EV that helped to employ 4 adults with autism over a span of 14 days. We invited Van Hatchell, Director of Marketing and Communications at Extraordinary Ventures, to write a guest post about the important services Extraordinary Ventures contributes to the ASD community.

Ewan, an adult with autism, is an employee at EV Gifts

Ewan, 23, graduated from Chapel Hill High School and immediately faced the daunting task of finding employment in our country’s tough job market. Like all recent grads, Ewan was forced to deal with the uncertainty of employment. But Ewan is no ordinary high school grad. Ewan has Autism.

For 17 year, Ewan benefited from the structure of the special education classrooms of Chapel Hill City School.  Once he graduated, his family realized there was nothing else Ewan was entitled to. He would face the job search like his peers – while bearing the extra burden of his developmental disability.

Ewan volunteered at the University Library, making copies and completing small tasks. His family hoped the library would see the value that Ewan added to their daily work environment and agree to hire him. Months passed with no success.

Then he heard of Extraordinary Ventures, a nonprofit that was exclusively interviewing adults with developmental disabilities. Ewan was hired.

In response to the increasing population of autistic adults, a group of parents in Chapel Hill took charge by taking a non-traditional approach. They set out to start an organization that would start small businesses to employ adults with autism and other developmental disabilities. Extraordinary Ventures was born.

(more…)

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Photo of Travis, from his website

Travis Breeding’s work at Starbucks is an exciting look into the employment opportunities available for individuals on the Autism spectrum. At Starbucks, Travis, an adult with Asperger’s Syndrome, works as a Barista, making drinks, taking orders, greeting customers, and working at the drive-through station. Though Travis thought initially that it would be difficult to find employment, he has found Starbucks to be a welcoming setting for individuals on the Autism spectrum. Now, Travis is filled with nothing but anticipation and excitement for his new career:

I’m looking forward to starting this new journey as a partner/employee at Starbucks. Finding employment that works for someone on the autism spectrum isn’t always easy. I will continue to blog and share some of my experiences about working at Starbucks but for now I must get off to memorizing the different types of drinks.  Please stay tuned for more in the coming days and weeks on this exciting journey.

Read Travis’ blog, detailing his experience at work:

Day 1

Day 2

Day 3

Day 4

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