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

January 9, 2013

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!

Take Care of Yourself. No One Else Will.

January 8, 2013

You are not a cat and you and you don’t have nine lives. Even if you believe in reincarnation you only have one go at this time right now. So it’s important to take care of your physical and mental health.

If you are a caregiver to others, it’s all too easy to lose yourself. There’s so much to do, you have barely time enough to take a shower.  It’s hard to make time for yourself every day.  Often we put ourselves in second place – but this is wrong! If you don’t take care of yourself, you will be no good for anyone else. Tomorrow there will be more care taking and more reasons why you can’t do something you want to do to take care of yourself. So you have to find some time every day.

For some it is impossible to leave the house, or find more than 10 to 15 minutes at a time  (I’ve been there!) but it’s important to create pleasurable moments for yourselves in even those short periods of time.

Today I’m meeting a friend and other dog-walkers for a walk. This takes care of three things important to my well-being: I’ll get some exercise (physical health), I get to spend time chit chatting with a friend (mental health), and I get to see Handsome have fun with his dog-mates ( laughing is a great stress releaser). OK, so I have to do this at 6:15 am  (where even in San Diego  it is cold and still dark this time of year) before my husband leaves the house, but hey, nothing’s perfect!

What are you going to do to take care of yourself today?

Baby Steps Are OK

January 7, 2013

I don’t know about you, but many times I don’t get things started because I feel  overwhelmed by the enormity of a task at hand, I start thinking of all the steps needed to be taken or all the answers I need in order to get results. Whether it is making plans  for when we are no longer around for Jeremy, or just  getting my messy desk under control, I start thinking of all that needs to be done and before long I feel overwhelmed.

When I worked as  a line producer for a soap opera, I had to get a 26 minute show in the can every day. I got used to having “break downs” for each show and a plan for every eventual problem that could come up. The show had to be done. Life may seem as dramatic as a soap opera at times, especially for those of us with children with autism or other special needs. But in reality, real life is a lot messier.  You may have goals –  but unlike scripted shows, you can never be sure of the ending. So trying to think ahead of all the possible solutions to challenges that may come up can feel overwhelming.

So my new mantra for getting unstuck and  moving forward is that baby steps are OK.  I don’t have to have all the steps figured out – the important part is getting started.

Baby steps can be taken even when you only have 15 minutes. The to do list can get smaller. The desk will look less scary with one less pile and a fifteen minute dent in it. Information and possible answers to help plan for a child or elderly parent  can be researched in small doses – as long as all the information is stored in the same place and easily found when needed.

Think baby steps, and you’ll get there. In the end, they add up.

 

 

Creating Opportunities for Youths with Autism: The Autistry Studios

December 12, 2012

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!

Some More Thoughts on Autism and Employment from Readers

October 25, 2012

A few months back, I wrote a blog post on employment:  Autism and Employment: What are some barriers you or a loved one have encountered?  and people are still making comments on linked-in about it. Here are a few of them:

Posted by Barbara Bissonnette:  I think it is positive that there are more organizations adapting the Specialisterne model. Right now, the focus is on high tech, but I bet that will change. The numbers are so big, the topic of employment is finally on the radar screen.
This may at first sound counter-intuitive, but I think that networking is particularly important for those individuals who are seeking competitive (not sheltered or supported) employment. I am not talking about business mixers. I mean one-on-one networking, online, and strategic volunteering.
Individuals must be clear on their skills, and what jobs they qualify for. I find that literalness and difficulty seeing the big picture can create a lot of confusion. I’ve had clients who notice one or two key words, and believe that they match the job criteria. In reality, they are missing critical experience or knowledge.
Finally, a person needs a realistic job search plan. The individuals I see who are really struggling are basing their entire search on passively sending resumes in response to posted openings. This is the hardest way to get a job.
I encourage people to get involved in a hobby or other activity that puts them in touch with other people. This is also a job search strategy. Several of my clients found jobs through people they knew from hobby clubs or through their religious organizations.

Posted by Teresa Rios Van Dusen :  My son and I went to visit NonPareil Institute here in Plano, TX. They work with training and producing software just hiring people on the spectrum. They understand autism and they created a company that has all necessary accommodations for people on ASD. They have a firm believe that they can have commercial success by creating these accommodations, because the time they are productive make up for the time they need to refrain from working. They have flexible work hours, they have a very opened environment, they understand when an employee needs a time away, they provide the necessary tools for them to be productive. But the most important thing is that, as everyone their is on the spectrum, they are not judgmental about each other’s behavior.

Posted by David Hamilton : My daughter is 26 and works at home as a free lance grafic designer , sjhamilton.com and www.atticuspetdesign.com . In spite of her talent she cannot negotiate the nuero-typical world and so will never likely be accepted in an enviorment that does’nt understand the challenges of being autistic . “We” need our own culture or “sub”culture , i feel if this problem is ever going to be adequately resolved . A corporation for Aspie employment . Anything else is redundent . And like so many efforts directed toward children the aim is to make a neuro-typical individual become more “like us ” . We are not not you and that’s ok . Why don’t neuro-typicals design a protcal to become autistic . The bias is clear . Knowing this should be enough to convince most people we need our own identity and culture that supports acceptance not change .

Posted by Michael Rana II : One of the struggles that folks ‘on the spectrum’ face is that we’re looking for work in a neurotypical world. We also live in a world that demands change, whose structure changes on a daily basis. It’s like an epileptic going to a disco ball – they’d be out in 5 minutes.
I am one of the more fortunate Aspies, who grew up with change (I grew up military); for me, when something DOES NOT change, it bothers me. I know that when I change something (on my terms), it doesn’t bother me, but if someone changes my structure without a solid reason for it, it does bug me.   Teresa: “He has a hard time passing the recruitment screening in big companies, because usually they apply aptitude tests. ” – Most neurotypicals struggle with those because they’re ‘rigged for the house’. An Aspie that has no concept of social cues (and this would be one) would not realize that in order to pass that test, he or she would have to answer in a certain way. I could go into more detail, but it might be easier by email. My email address is on my profile, if you’d like to connect.

 

 

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

October 23, 2012

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

September 23, 2012

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!

 

Autism College Q & A with Elaine Hall & Chantal Sicile-Kira on September 24th

August 25, 2012

Join  Visiting Professor Elaine Hall and Chantal Sicile-Kira,  author and founder of Autism College, for a free Q & A on Monday September 24th from 6:00pm to 7:00pm PST (9:00pm to 10:00 EST). Sign up for the Autism College newsletter to receive instructions on how to participate and send in your questions. Instructions will be sent via newsletter before the Q & A takes place. (Already registered? Hold tight, the participation link will arrive soon).

Topics to be discussed will be Elaine Hall’s work in the autism community including the  Autism Arts Enrichment program at Vista Del Mar,  and the upcoming conference they are hosting entitled  Re-Thinking Autism: Neurobiology, Technology, Policy, Community.  The conference will take place Thursday November 1, 2012, from 8:30 am-3: 30 pm. Speakers include Diana O’Brien, Founder of Impact Autism; Pat Levitt, PH.D,  Professor of Neuroscience, Director of USC Neuroscience Graduate Program; and Peter Bell, Executive VP Programs and Services for Autism Speaks.

Save the date – Information will follow soon on how to sign up.

Elaine HallAbout Elaine Hall:

Elaine Hall, “Coach E!” referenced by the New York Times as “the child whisperer”, was a top Hollywood children’s acting coach whose life changed dramatically after her son Neal, adopted from a Russian orphanage, was diagnosed with autism. When traditional behavioral therapies didn’t work, she sought the esteemed Dr. Stanley Greenspan who encouraged her to rally creative people to join Neal’s world and he slowly emerged out of his isolation.

Elaine then developed these methods to train staff and volunteers and created, The Miracle Project, a theater and film social skills program profiled in the Emmy winning HBO documentary, AUTISM: The Musical. A media personality, she has appeared on CNN, CBS, Oprah Radio, and featured in the LA Times, New York Times and Wall Street Journal.

She is an international inspirational keynote speaker, an Ambassador for Inclusion, a workshop leader and blogs for the Huffington Post. Her memoir, Now I See the Moon, was chosen for World Autism Awareness Day at The United Nations, where she has spoken several times.  Now I See the Moon has now been selected as suggested reading for International Jewish Disability Month 2013. Elaine is currently the Director of the Autism Arts Enrichment program at Vista Del Mar in West Los Angeles, where she innovates  and oversees state of the art programs including the Bar/Bat Mitzvah and religious education programs.

Elaine has received honors from Autism Speaks, the Mayor of Los Angeles, Senator Pavley, Areva Marin, Holly Robinson Peete and others.

Her latest book, co authored with Diane Isaacs, Seven Keys to Unlock Autism: Creating Miracles In The Classroom, is receiving critical acclaim is being used as university text book and she has led workshops in the Seven Keys Internationally She lives in Santa Monica with the two loves of her life, her son, Neal and husband, Jeff Frymer, a Marriage and Family therapist.

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

August 14, 2012

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!

Finding a Friend in School

August 13, 2012

Contributed by Kim Davis from the Indiana Institute on Disability and Community

When a student is in school, academics are the main focus. However, one aspect of learning that is not given enough emphasis is community building and developing relationships/friendships; the social aspect of education. Social goals and building friendships are mentioned in school conferences but are seldom fully explored and many times a student’s support team thinks academic success is the key to future accomplishments in secondary education and employment as well as helping to provide for a rich social life. This idea needs rethinking.

Social development implies that more than one person is involved, and that there are interactions with others and that there is participation in an activity. We are all social beings and need interaction to continually learn and develop. In schools, the word “social” is often found in the Individualized Education Program (IEP) annual goals:

Main Goal: Johnny will improve his social skills
Obj. 1: He will say please and thank you,
Obj 2: He will sit with a peer to play a game for 20 minutes, and
Obj 3: He will cover his mouth if he coughs.

Those are useful social skills, but are they the only type of goals that should be written in an IEP? There are other opportunities in school for true ‘social’ situations. Surely, if one thinks hard enough, other options can be discovered.

There are many opportunities for social interactions at school that are often overlooked due to limited time and the focus on keeping things moving. However, with some planning these opportunities can become excellent chances to develop and enhance social exchanges. It is important to think creatively in order to build in new chances for relationships to develop. Elementary, middle, and high school offers chances for building social networks, friendships and communities. At the secondary grade levels, there are more varied options offered by the school. At the each level, an adult, acting as a facilitator, may be necessary to get the relationship going or to offer ongoing support. Consider the following options as places that a student on the autism spectrum and his/her peers can begin to develop meaningful relationships. Remember, every relationship starts slowly and then grows as people get to know one another. What everyone needs is the opportunity. Here are some ideas to consider:

Getting on and off the bus:
Instead of a parent driving a student to school, have the student ride the bus or even carpool with a neighbor or classmate. If they have to wait, a peer or peers could wait in line for the bus along with the student with ASD.

Before school:
The student should be where other students are in order to participate with them; such as hanging out with peers in the gym, cafeteria or hall instead of simply going to the classroom.

In the halls:
A peer buddy could walk with the student with ASD to the next class or to the library, gym or cafeteria. Sometimes the student might need to leave early to avoid hallway congestion which could cause sensory challenges.

Before class starts:
Peers could assist the student in prepping for class or simply chat until class begins, just like other students do.

Class breaks:
Going to the restroom, getting a drink or simply having some down time in class could all be supported by peers.

Group activities in class:
Anytime there are group activities be sure the student with ASD is included in a group that has peers who know him or her, and understand the strengths and gifts of that student.

Lunch:
Include the students with ASD with everyone else and use peer support instead of having them sitting alone or at the special education table.

Recess:
This time has been described by one boy with ASD as his “personal hell” due to bullying, not knowing what to do, or no one interacting with him. This is the perfect time to have peers interact and support the student with ASD. They can rotate around by doing a different activity of interest with the student or introducing a new activity.

After school activities: These will be different for each level. Elementary activities may be after school day care or extended day programs. These certainly offer opportunities for student on the spectrum to play with their peers. Other events tend to be done in the evening for the family.

Middle and high school offers a variety of activities that are immediately after school such as clubs, music, or sports events.

Music: Many schools have a music program at holiday time. Students should have the chance to participate in those singing and musical events so their families can know that joy. Perhaps they do not sing every number but instead ring a bell, tap a drum, or hold a prop. The student should be there as much as possible.

At the middle and high school level there are more musical options that become available. Learning to play an instrument and joining band begins in middle school. This can lead to other opportunities such as a concert band, marching band, jazz band or pep band for sporting events. There are also drum line groups. Orchestras would play concerts and also for musical plays.

One does not need to play an instrument to enjoy music. Middle and high schools also have choirs and choral groups that sing at school events and also compete.

Finally, if a student really enjoys music there is always the need for band boosters who provide support to the various music activities at schools.

Drama: A theatre program may be available at middle school but for sure is available at the high school level. There are different parts of putting on a play that a student may enjoy besides being an actor with a role. The other aspects include: creating the set, managing the sound, adjusting the lighting, setting up and moving set props, cueing the actors, and the designing and creating of the costumes. Each aspect involves a different skill and may tap the interests of the student with autism.

Clubs/Organizations: Schools have an abundance of extra- curricular organizations that could be fun for any individual with ASD based on his/her interests. The huge interest in certain books or movies often creates a place to begin exploring ideas.

Here is a sample listing:

Art Club
Best Buddies
Book Club
Chess Club
Brain Game/Quiz Bowl
Digital Arts Society
Foreign Language Club
Environmental Club
Habitat for Humanity Group
Year Book
Newspaper
Ping Pong Club
Poetry Club
Science Olympiad
Spell Bowl
Student Council
Swing Dance
Backpacking Club
Black Culture
Diversity Club
Ham Radio Club
Gothic Club
Photography Club
Ski Club
Speech and Debate
SADD
Computer Games Club
Yearbook

Once again, the interest area of the student should drive the club or organization that he joins. Each club meets on a regular basis and that increases the chance for developing meaningful relationships.

Sports: Finally, there are athletic events at both middle and high school levels. Both boys and girls athletics offer a wide variety of opportunities for interactions from participating on a team to being a member in some other fashion. Options include: managers, scorekeepers, time keepers, equipment caretakers, equipment room managers and a batboy or girl.

Here is a potential list of teams to consider. Each offers different opportunities for participation.

Baseball
Basketball
Football
Volleyball
Golf
Tennis
Softball
Soccer
Track
Swimming
Cross Country
Wrestling

Of course with athletics comes cheerleading, or pom squad opportunities. These groups are also a big part of middle and high school. Here someone could participate in cheering but also in creating posters or signs for the school, making announcements, posting announcements or posters or creating any other team spirit materials.

Truly, some of these options may be more challenging than others when it comes to creating meaningful social interactions. But it is worth looking at them all, even small and successful interactions can eventually grow into true friendships. Everything can start small and build from there. Consider the use of peers in each situation to simply begin the process of relationship building and helping your students with building a community based on interests and skills. Their life and the lives of his peers will be greatly enriched.

Davis, K. (2010). Finding a Friend in School. The Reporter, 15(4). Retrieved from http://www.iidc.indiana.edu/index.php!pageID=3280

 

 

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