Can a teenager or adult with autism still benefit from treatments and therapies?

Often I get emails from people asking for advice. This is one I get often, so I’m posting it here.

Dear Chantal,

Can an adult or teenager still benefit from ABA therapy, music therapy, auditory integration therapy? How beneficial is vision therapy and auditory therapies? Are there research studies or evidence based studies supporting these therapies?

Sincerely,   Sheila in Jacksonville

Dear Sheila,

I know we often hear about that ‘window of opportunity’ being open during the early  years, and it is true that early intervention has been shown as being the most effective intervention to help children with autism acquire skills.  However, that window does not  shut after a certain age. One thing we also know is that there is such a thing as neuroplasticity, which means the brain can continue to change and improve, which is why an old dog can learn new tricks.

You are right to look at the research, but when looking at different therapies it is also important to look at the person you are trying to help, and see if he has the characteristics of the type of  person who has benefited from those therapies.  When looking up information in regards to treatments and therapies, as well as research findings, remember to look carefully at who is providing the information (some websites have information but do not tell you the source of the information),  how the research was carried out, and who is reporting it.  Also, adults on the spectrum may be able to tell you what their experiences have been with different therapies.

For  information on the effectiveness of  many treatments and therapies on adolescents, as well as reputable websites for current information,  see my book  Adolescents on the Autism Spectrum.

Chantal

Hire Autistic People; Here’s Why

Margaret Heffernan, blogger for for INC. interviewed me about autism and employment and wrote this blog post. You can read the original post and comments here.

Jeremy is autistic. He is also very bright, observant, and, it now appears, synesthesiac: he sees people, ideas, and feelings in colors. At first, his mother Chantal was skeptical–“I’m not, she said pointedly, from California; I’m from New York!” But she appreciated that Jeremy was being (as always) totally honest in what he told her and, when he said he wanted to start painting, she took him seriously, and encouraged him.

“He’s painting his dreams,” she says, “and people will pay for that. So often, he does advocacy for the autism community. He sits on taskforces. He has tested curriculum to teach life skills. He does conferences. He writes articles, and blogs for the United Nations. And, most of the time, people expect him to do this for nothing–or for coverage of his expenses. He is grateful for the opportunities. But he has a life, and a living to earn too. So the fact that people will pay for his painting: I’m all for that.”

Chantal Sicile-Kira is a leading authority on adolescent and early-adult autism. She’s written five books on the subject, the latest of which Jeremy co-authored. A passionate advocate for the autism community, she is adamant that autistic adults can and will be valued employees.

“Lots of people are pushed into academic qualifications and that’s fine,” she says. “But then the system breaks down after high school. It’s important for people on the autism spectrum to take an extra school year to learn life skills: self advocacy, relationships, organization. If they can do this, they can become employable. It’s utterly wrong that they should end up pushing shopping carts when, a year earlier they were getting high grades.”

As Jeremy writes in his blog, while “unemployment rates are frankly high for people in general, studies in the U.S. show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22% of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism. This truth is that our differences make it difficult for employers, employment agencies, and job coaches to realize our capabilities and to offer specific recommendations based on our shared label. Belief in the ability of each person is necessary because judging us by neurotypical (ie “normal”) standards is not a real measure of our capacity for learning and being able to earn a living.”

The imminent arrival in the United States of Specialisterne has prompted a fresh debate about how to employ autistic talent. The Danish firm has pioneered finding meaningful roles for autistic people in Europe and now founder Thorkil Sonne hopes to do the same in America.

“It makes perfect sense,” says Sicile-Kira. “There are so many things that autistic people can do–and do well. For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. Autistic people are very loyal, fastidious, and reliable. They are not going to come in late because they had too many tequila shots the night before.”

What’s key, she says, is to find (or to become) trusted intermediaries. That isn’t something that is unique to the autism community; after all, she says, she has a book keeper for her accounts. Jeremy is a wonderful painter but he needs someone to help with marketing; most actors have agents. What’s the difference?

I’ve known Chantal for a long time and have always been in awe of her astonishing energy and imagination. She’s proved a brilliant champion for the autistic community and never more so than now, when the first large generation of children, diagnosed correctly with autism, is about to graduate high school. She challenges all of us to think differently about who we might employ and how.

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

Together We Can Create the Future We Want to See

We all know about the high rate of unemployment for people on the autism spectrum. Below is  a press release about a venture focused  on entrepreneurial solutions for adults with autism that is having it’s first session on Thursday, January 10th.

The Autism Entrepreneurs Center, run by LTO Ventures, is operating  in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Autism Entrepreneurs Center to Help Adults with Autism Start Up and Operate Real Businesses in Nevada

First Venture in the U.S. Focused on Entrepreneurial Solutions for the 90 Percent Unemployment Rate for Adults with Autism

HENDERSON, Nev., January 7, 2013 – LTO Ventures today announced the opening of itsAutism Entrepreneurs Center, first and only venture in the U.S. specifically established to help adults with Autism Spectrum Disorder (ASD) start up and operate real for-profit businesses.  The first session of the Center will be held Thursday, January 10, 2013 from 2 to 4pm at the Autism Center of Southern Nevada, 72 N. Pecos Road, Suite C, Henderson, Nev.

LTO Ventures  is a 501(c)(3) non-profit company with headquarters inHenderson, Nev. that develops live/work/play communities for ASD adults.  LTO Ventures created the Autism Entrepreneurs Center to provide ASD adults the specific guidance, tools and resources they need to create, launch and operate their own real for-profit companies. LTO Ventures plans to pilot the program in Southern Nevada with the first-year goal of creating 12 new incorporated businesses and putting up to 100 ASD adults to work making minimum wage or better.

LTO Ventures also plans to create two related entities: 1) partnerships between ASD adults and typical adults to jointly launch and operate businesses; and, 2) a “business incubator” to encourage businesses created within the Center to share resources.

“Most vocational programs for ASD adults focus on convincing existing employers to hire them. We believe there are ASD adults who have great ideas and unique talents who would be more successful bringing their own ideas to fruition and working in settings created to foster their abilities,” said Mark L. Olson, President and CEO of LTO Ventures. “By giving ASD adults another choice for meaningful work, we are supporting self-determination in their employment outcome.”

“But like many typical individuals, ASD adults don’t know necessarily how or where to go to get started. Our Center proposes to pick up where job development support groups, short-term vocational training, and employment toolkits end, and provide the step-by-step guidance, tools and resources to create and operate real small businesses,” Olson said.

  •  Easter Seals published in 2011 the results of a study conducted in 2010 that found that only 11 percent of adults with disabilities work full-time, and only 32 percent have any kind of employment, compared to 48 percent of adults without disabilities working full-time and 74 percent working full-time, part-time, or self-employed.
  •  Easter Seals also reported that autism was the most prevalent disability — 62 percent of adults with disabilities in their study had some form of autism (Autism, Aspergers Syndrome, Pervasive Developmental Disability-Not Otherwise Specified, Rett’s Disorder)
  •  Autism Speaks, a leading advocacy organization for individuals with autism, in a 2012 Employment Think Tank, reported more than 500,000 children and teenagers with autism will reach adulthood in this decade and join the market for jobs, housing, and services.
  •  The California Senate Select Committee on Autism reported the average salary for those ASD adults who are employed is $4,824 annually.
  •  Unemployment in Nevada statewide is the highest in the U.S. at 10.8 percent for November 2012, the most recent reported month, and 10.4 percent in Las Vegas.

WHO SHOULD ATTEND:  ASD adults ages 18 and older, and their parents, family, caregivers and agency staff are invited to attend the Jan. 10 session. Anyone else interested in learning more about how to create businesses to employ ASD adults, or to help ASD adults start their own real businesses is encouraged to attend.  There is no cost for this session.

The Autism Entrepreneurs Center operates in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Conference Jan 11 &12: Adulthood on the Spectrum: Preparing for it—Living it

Here’s an opportunity to get educated about  Adulthood on the Spectrum: Preparing for It — Living It. The Greater Long Beach and San Gabriel Valley  ASA Winter 2013 Conference is  taking place on January 12 – 13th, 2013 at The Grand Event Center
4101 East Willow Street, Long Beach. For more information or to register contact Regina Moreno: (562) 237-1520, or visit their website.

Speakers presenting include: Brian R. King, Michael John Carley, Becky Tschirgi, Mary and Jerry Newport, Johnny Seitz, Chris Rials-Seitz M.A. , Sue Rubin, Jeremy and I among others.

Hope to see you there!

Creating Opportunities for Youths with Autism: The Autistry Studios

The last few months I’ve been traveling for speaking engagements and everywhere parents and educators are concerned about the future of their student or child. Whether it’s New York, Texas, Florida, California, Ohio, New Jersey or Maryland, there is concern: What will our youths do to earn a living when they transition out of school, and how can we best prepare them?

Starting today, as we head into the New Year, I would like to highlight on a regular basis people and organizations that are creating innovative opportunities for our young students to learn skills they can then apply to getting a job or earning money. I’ll also highlight those who are creating successful job and career opportunities for those on the spectrum.

If you have a story you would like to share, please send it in. We can all learn from each other.

Today I’m highlighting The Autistry Studios founded in 2008 with 4 students  by Janet Lawson and Dan Swearingen, the parents of Ian. When I wrote about them in the Social Relationships chapter  in  A Full Life with Autism (published in March 2012), they had about thirty students and workshops such as  a Build Stuff, Film, and Theater workshop. Now they have over 40 students.  Their mission was to provide a place where teens and young adults could create social relationships and develop skills based on their interests that could potentially lead to employment. Now, Autistry Sutdios’ next phase is to launch Autistry Enterprises, a manufacturing company creating unique works designed and made by Autistry students.

They say a picture is worth a thousand words, so watch this well-done ABC7 special. The Autistry Studios was recently  featured in their Profiles of Excellence.

Fell free to comment below, and don’t forget to send us your story of innovation!

Resources on Autism and Puberty, Hygiene, Sexuality, Bullying, Abuse

In early October I was invited by the Family Resource Network in Oneonta, New York to present for six hours  on  A Full Life with Autism: Preparing for the Real World.  It was a pleasure to meet everyone there and I promised to post some resources here in regards to puberty, hygiene and sexuality. I have added a few in regards to bullying and abuse as well.

For those unfamiliar with my book on adolescence, there are many resources listed in it on a variety of topics. You might find it useful as a general guide: Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, And Transition Needs of Teenagers With Autism Spectrum Disorders (Penguin).

Please read descriptions of the following books on-line so you can decide which of the books would be appropriate for your tween, teen or students.

  • Autism – Asperger’s and Sexuality:  Puberty and  Beyond, by Jerry and Mary Newport
  • A 5 Is Against the Law! Social Boundaries: Straight Up! An honest guide for teens and young adults
  • Taking Care of Myself  – A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel
  • The Girl’s Guide to Growing Up
  • The Guide to Dating for teenagers with Asperger Syndrome
  • Intimate Relationships and Sexual Health

 

Here are some resources in regards to bullying and abuse:

Hope you find these resources useful!

 

Life with Autism: Mighty is the Fear

Two caregivers were arrested this past week in Valley Center (near San Diego, CA) for allegedly abusing a severely autistic non-verbal young man in his home. They had been in the family’s employ for over two years and were caught on videotape over a three week period.

This is a parent’s worst nightmare come true; and if it’s a nightmare for the parent imagine what it is like for the victim.

According to reports in the media, the mother, Kim Oakley,  saw changes in her son, Jamey, indicating he appeared to be unhappy on the days following the men’s shifts. Kim also realized Jamey was trying to communicate something to her. When she questioned the caregivers, “They blamed everything on his severe autism,” according to newspaper reports. Kim set up a surveillance camera after noticing that the wires to a baby monitor had been cut. Videos shot over a three week period led to the arrests.

My heart goes out to Kim and Jamey and the rest of the family. Unfortunately their story is not unique and it highlights the difficulties of all families requiring caregivers and support staff for their severely autistic loved one.

How often do we hear about a non-verbal person that “his behavior is due to his autism”? Bull! All behavior is communication and Kim, like most moms and dads, know this. Watch “Autistic Cases ‘Autism Experts’ Run From”    that Kim Oakley posted on YouTube. Jamey’s behaviors  in this video were particularly bad because he had a Urinary Tract infection and once it was diagnosed and treated, he was better. But is took five days to get it taken care of.

Recently my autistic son Jeremy was in so much pain that he became hyper and aggressive and kept trying to take showers as if that would help. Nothing could calm him down. We had never seen anything like it before. He was uncontrollable. We were lucky he could type and tell us he was in pain. But it also took five days to figure out why he was in pain, and a week to be able to do anything about it. Turns out is was due to a change in the generic brand of his medication for epilepsy – we were not warned that any changes in the brand could cause such reactions. You can read Jeremy’s comments about his experience here.

To top it off, the lack of understanding and caring from some of the people at the pharmacies we had to deal with was appalling. Seeing your child suffer and not being able to do anything about it is excruciating, and when those supposedly there to help are not treating the situation with the urgency it warrants is unbelievable. As parents, we try to remain calm and act ‘normal’ and polite so we won’t be taken for one of those ‘crazy  parents’.  We are not crazy.  But we have no patience for not being taken seriously and being dependent on people who just don’t get it. Believe us when we tell you our child is in pain and we need help NOW.

When you have a non-verbal child or a child dependent on caretakers, there is always the risk of abuse, and not just at home. The same risk exists in residential facilities, community living options and even in day programs, camps and community activities. To this day, my son Jeremy suffers PTSD due an abuse that occurred outside the home years ago. He still refuses  to participate in any activities that are not inclusive, that are intended for developmentally disabled participants. As he puts it, “They are grouping the victims.”

Although Jeremy received therapy with some help from the California Victim Compensation Program, he continues to have panic attacks which impact his ability to participate in all that he would like to do outside the home. Recently he had flashbacks and he would flail out and hit whomever was standing close, ‘seeing’ his aggressor. This adds another dimension to hiring and training staff.  As well, it leaves  Jeremy feeling terrible about his outbursts. Dealing with PTSD has become  important to him and recently he completed a painting about his PTSD entitled “Mighty is the Fear.”

Even without thinking about abuse, finding people who understand the importance they have to a person’s quality of life  and the willingness to make the commitment is not always easy when someone requires 24 hour supports. Recently, one person who was hired and trained as a support person and communication partner for Jeremy decided to extend their vacation from two weeks to four weeks, meaning the person would not be around to support Jeremy at either his college class or after school doing his homework at the beginning of the school year as  expected.  This was a big blow to Jeremy and to his ability to attend college successfully.

Most of our experiences with support staff, service providers, medical professionals and others have been extremely positive. Usually I focus on writing about  positive  experiences and strategies, but hearing  about Kim, Jamie and their family’s experience with the two caregivers hit a nerve and I couldn’t stay quiet.  I feel terrible for the family.  Stay strong, Kim!

Trying to learn from all our experiences and focusing on the positive relationships we have forged over the years due to Jeremy’s need for supports is how we continue to survive and thrive.  As Jeremy put it in A Full Life with Autism (Macmillan 2012), “I learned there were really bad people who could do things to your body, but I learned that you don’t have to let them in your soul.

Ain’t that the truth!

 

Need Information re Teens with Autism? Autism College course beginning Tuesday August 28

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how and when to explain puberty to your growing child? Are you at a loss about what to explain about the birds and the bees? Are you wondering what an ITP is and how to best prepare your child or student for adult life? Then the course Adolescents on the Autism Spectrum is for you.

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this interactive course will be taught on-line to a small group on Tuesday August 28, Wednesday August 29, Thursday August 30; from 6:00 pm to 8:00 pm PST (9:00-11:00 EST) for a fee. To sign up, go here.  Instructions will be sent to you within 24 hours of sign up.

The cost for the  6 hour- course over three days is  $99.00 and provides:

  • 6 hours of training
  • PowerPoints provided before the webinars to help with note taking.
  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • BONUS: Written transcript booklet from the original live course  provided in March will be provided to those who sign up (a $39.00 value – see description in the Autism College store)
  • BONUS: Opportunity to watch replay of webinar at a later date (convenient if you miss a session).

Topics to be covered during the 6 hours include:

Adolescence 101: The Teen Basics :Everything you need to know (but don’t know who to ask)

  • 13 things every parent or educator needs to know
  • The general challenges faced by ASD teenagers
  • Sensory processing challenges in adolescence
  • Functional strategies to help with daily transitions
  • Family and sibling concerns
  • Teaching about puberty
  • Hygiene and self-care
  • Masturbation

Adolescence 102: Relationships: It’s Complicated

  • The notion of privacy and consent
  • Relationship boundaries
  • Sexuality
  • Self awareness
  • Self- regulation
  • Bullying
  • Interdependence

Adolescence 103: The Transition Years: Plan, Prepare, Practice for the Real World of Adult Life

  • Preparing the transition to High school
  • The ITP- Individual Transition Program and IEPs
  • Teaching life skills needed for work and / or college: self-esteem, self-advocacy, executive functioning, self-reliance
  • Building on strengths
  • The use of mentors

Sign up now to reserve your spot! Questions? Send us an email!

A Full Life with Autism at ASA

Jeremy and I are looking forward to co-presenting at the Autism Society of America’s  national conference this week in San Diego, our hometown! We’ll be talking about:  A Full Life with Autism: A Mother-Son Journey about Transitioning to Adulthood. 

Here is the description: Jeremy and Chantal explain each from their own perspective why the transition out of school district services is difficult and how parents can prepare themselves and their young adult for this life change. They share information they learned while researching to write A Full Life With Autism (Macmillan 2012). Practical advice includes how to assist the young adult in creating a self-determined life; how to create a circle of supports to help the person reach his/her goals over a lifetime.

Future Horizons will be selling our book, A Full Life with Autism, at their booth. Please stop by to say hello!

Why We do What We Do

Some days I wonder why I do what I do, and  at times Jeremy wonders if all the time and energy it takes him to write is worth it. So we are always happy to receive emails like the one below, from a dad, who is referring to our book A Full life with Autism.

“I am the parent of a 34 year old woman with high functioning autism.  I have started to read a number of books on ASD over the years and usually stopped – feeling overwhelmed @ about page 30.  But my daughter has sat alone in her room long enough.  Thanks particularly to Jeremy’s comments in the book and Chantal’s understanding and good explanation – I think we can do this.  I am buying the book for self and two adult siblings so we as a family as well as our daughter can begin to understand some steps to finally stop our avoidance and begin to develop a life of independence and quality for her.  THANK YOU!”