TV Series Parenthood Raises Autism Awareness

I wrote about the show Parenthood, when it first came on. Now, several shows into this new series, and I am still watching it. Adam (Peter Krause, "Six Feet Under"), the oldest Braverman sibling, and his wife Kristina (Monica Potter, "Trust Me") are adjusting well with their son Max (Max Burkholder, "Brother and Sisters"), who was recently diagnosed with Asperger’s Syndrome.

In last night’s episode, Adam’s father, Zeek (Craig T. Nelson, "Family Stone," "Coach"), moves in with the family. It was interesting to watch the dynamics between father/son, and grandfather/grandson. One very poignant scene was when Craig T. Nelson’s character describes what it s like living with his son’s family. He said that Max ruled the house.

It was obvious that he didn’t approve. Here is a man that was used to having everything revolve around him. He was in charge of the household when his kids were growing up. Now, he is in his son’s house, and their schedule and lives revolve around Max. Then he saw what happens when the schedule is disrupted. He realized how important predictability can be for a child on the spectrum.

For an outsider to come into a home with an autistic child, it could be like walking into another world. Face it, we do a lot of adjusting for our child. It gets to the point that it is easier for the family to do that. Then, over time, it becomes natural. Seeing things from the grandfather’s point of view, reminded me why my parents sometimes have a difficult time watching my son. Especially, since my son is nonverbal. When he is upset, he has an extremely difficult time communicating with his communication device. I try to make sure my parents know all of his triggers, but I always miss a few or they forget.

I think the writers are doing a great job with this show. I believe that the more people that watch it, the more they will understand what our lives are like. So, if you are not watching this show, DO SO.

An Asperger Adult Mom With An Autistic Child Interview

My latest interview is with Carol Greenburg. She has the unique perspective of both an indiviual with autism and a mother of an autistic child. Here are the questions and answers from the interview. I enjoyed getting to know Carol and her child so much, that I also conducted a second interview with her on the subject of vaccines and therapies. That will be posted tomorrow.

1. As an adult with Asperge's Syndrome and a mom of an autistic child, you have a unique perspective. Do you think you understand your child better than most autism parents?

I feel I do understand my son pretty well, though I have no basis of comparison to the level of understanding between other mothers and sons. I can say that I think my own Asperger's gives me a bit of an edge in what I decide to worry about and not worry about. I often observe self-stimulatory behavior in my son that exactly mirrors the stims I used for self-calming at that age, and am therefore less likely to overreact and automatically block "odd" behaviors. I believe that moment of thought before saying "Stop it" makes for a more relaxed environment in our home. If he starts singing the same song over and over to himself, which is one of the stims I had at his age, but no longer do, I try to engage him rather than just telling him to stop, which leaves me at least feeling good that I just had a nice interaction with my son rather than frustrated that I can't make him behave in a more typical way.

2. Getting services for your child can be extremely difficult for most autism parents. What do you recommend is the first step in attaining services for your child?

As a special education lay advocate, I feel duty-bound to answer that by simply advising everyone to hire me Here's a more serious answer, though: Think rights Talk Responsibilities. The law is on your side a lot of the time, so there's a great temptation to run into every IEP meeting waving statutes and yelling about how your kid's and your rights are being violated. Maybe they are, but the point is not to express your anger, however entitled you are to it, the point is to solve the problem. That means that no matter what the school has said or done, you need to excercise enough self-control to say "I recognize that my child's education is ultimately MY responsibility, and that you have the training and expertise to help me fullfil that responsibility. You [the district, the principal, the teacher] are a valuable resource. What can I as a parent do to partner with you to get access to the wisdom that your training and experience can yeild?"

3. What kind of services/therapies do you think are an absolute necessity for an autistic child?

I'll say the same thing the law says: The child gets what the child needs. Children and their needs are completely individual and they change over time. My son and I are both on the autism spectrum: I had no speech delay. He has a severe speech delay. He needs as much speech therapy as we can get him. Speech therapy would have been a complete waste of time for me at his age; all I did was talk. But I was constantly saying the wrong things to the wrong people. What I needed was the kind of social skills intervention, he's already gotten. At only seven he's immensely popular, never been bullied, and thanks to all of the OT he's gotten, he's actually more of a jock than anyone in our family going back generations.

4. Who pays for these services? The parents, insurance, school? When should parents draw the line at paying for therapies? Do you believe that it is fair on them and the child to be bankrupt and to lose their homes in order to support therapy for their child? (I've heard from parents that think it is and those who think it isn't.)

I don't feel I could function as an advocate and say I believe parents should foot the bill for everything. First of all, that's simply impossible in most cases. I don't personally know anyone rich enough to pay for the level of service my son gets without reimbursement. However, there are times when parents, who are fighting the good fight as they should, do need to pause and ask if they're looking for money from the best possible sources. True, your child has the legal right to a free appropriate public education, which encompasses much more than most people realize. That does NOT, however, mean that your automatic response to any need should be to hold out your hand to the local school board. Medicaid and medicaid waivers are overcomplicated to get, which is probably why they're underused, but if you can get your kid into that system, it opens up a world of resources. In the end, schools are more open to the requests of parents who also look elsewhere for funding. As far as insurance is concerned, you can't count on it, but you should be able to. The total lack of coverage for autistic children is a national disgrace, so if you have any energy left over from fighting for your child's individual needs, I can't think of a better cause than autism-specific insurance reform in which to pour that energy.


About Carol Greenburg

I am an adult with Asperger's Syndrome, the mother of a seven-year-old severely language-delayed autistic child, and executive director of a consulting company that helps parents of children with disabilities in get services for their kids. As part of a partnership with the Brooklyn Parent Center of BCID, I speak frequently at parent support groups, community-based organizations, and at universities all over Brooklyn. The motto in our home, and office is "Not sick. Not Broken. Just Neurologically Outnumbered. To find out more about me, my family and my work, please visit my company website www.bklynsnc.com, my company's Facebook page at Brooklyn Special Needs Consulting, or follow me on Twitter under the username "Aspieadvocate."

Diagnosed With Asperger's Syndrome

April is Autism Awareness Month and the value of awareness can’t be stated enough. My name is Aaron Likens and last year I have had a strange journey to discover that my passion in life is to raise awareness.

Raising awareness wasn’t always a priority. In fact, before I was diagnosed with Asperger’s Syndrome in 2003 at the age of 20, I had not even really thought of the autism spectrum as anything worth thinking about. Of course all that changed once I was diagnosed.

After the diagnosis I went into a deep depression. My life, as I knew it, seemed to cease. I lost the girlfriend I had at the time and my first passion and dream, driving race cars, was becoming harder to achieve.

A year after I was diagnosed a funny thing happened. It was late at night, and my depression was at its deepest point, when I sat down and started to write. I wrote about the relationship I lost and broke it down into why my behaviors were the way they were. The next night I wrote on a different relationship that had fallen apart in spectacular fashion.

Night after night I wrote a chapter on different aspects of my life. I had no intention of writing a book, but after about 3 months of writing I started to ponder if it was good enough. My dad had been sending my materials to a lady at Autism Speaks who was reading as I was going along and she had told my dad that my writings were some of the most important, eye opening first-hand accounts of Asperger’s.

I started writing my first book in 2005 and in November of 2008 my book, “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome” was released. I must admit that when it was released I was only anxious on what the sales meant for me. Just as my life changed when I was diagnosed, my life would take a turn in 2009.

I had my first book signing at a Barnes & Noble here in my hometown of Saint Louis. During the signing there were 2 sets of parents that came up, in tears, saying that their school district and doctor don’t understand. This may sound cold, but at the time I was simply thinking that these parents were at least one book sale. A classic case of lack of empathy, I know.

In the next 3 months I had 5 more signings and at each one the story that was told to me at the first signing was repeated. One parent was told, “Don’t worry about autism. He’ll grow out of it by the age of 16. They all do.” Still I was unmoved.

My dad had kept the lines of communication open with Autism Speaks and they sent me 2 tickets to the NASCAR Autism Speaks 400 held in Dover, Delaware. After the race I was going to drive up to meet the lady who first said my writings had merit.

During the race I began to truly think about what all parents had said to me at my signings. Above the roar of 43 engines I begun to understand just how wrong, and almost criminal, it is for parents’ fears to be cast aside. The quote from that one doctor roared around in my head faster and louder than any of the cars that day.

The following day I drove to New York City to meet with the lady. We talked for a long while and she asked me if I was still passionate about auto racing. I gave a reply that was more important than hearing that I was on the autism spectrum, “Yes, I still would like to race, but it no longer is the priority. Yesterday, Jimmie Johnson won the NASCAR race, but how many lives did he change? How many families’ lives were improved because of his victory? I had the talent to win, but life has a funny way of working out. I’m in a new race now, a race to raise awareness.”

Since that day in New York I have given radio interviews and have been more vocal on raising awareness. In March I started a full time job with Touch Point Autism Services as their Community Education Specialist to raise awareness and to promote early diagnosis and early intervention.

With this month as Autism Awareness Month there is no better time to spread the word. No parent should ever be told that autism will simply “go away”. Whereas before my life was about me, whether it was trying to race or trying to sell one book, now it is to try and educate anyone and everyone on what life is like on the spectrum and that there are therapies and interventions that work wonders.

So this April is my first Autism Awareness Month that I know what my passion is. I guess you could say that, for me, the race is on.

-written by Aaron Likens
About the author: Aaron Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome” and serves as Community Education Specialist for Touch Point Autism Services. His website is www.findingkansas.com and his blog can be found at http://lifeontheothersideofthewall.blogspot.com
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PURGE the ASS from Asperger Syndrome

The first syllable of Asperger is pronounced ASS. And that's how Aspies all too often come across to others. We stare at people (or never make eye contact at all), use our "outside voices" inside and even yell inappropriately, stand right up close to people, get into nit-picking arguments everyone else recognizes as stupid, address people's problems very bluntly and in many other ways just plain annoy others.

Therefore, relatively few of us can get and keep jobs (much above, say, Wal-Mart cashier), make and keep friends, stay for long anywhere outside our parents' homes or get dates.

As Albert Einstein is supposed to have said, insanity means doing the same things over and over again while expecting different results.

Einstein also supposedly pointed out that we cannot hope to solve our problems at the same level of thinking we were at when we created them.

If our lives aren't going well, we need to change. NTs change all the time when they see how their behavior cause sthem problems; we're no exception.

I'm no exception. I've been fired from more jobs than I can count on my fingers. (And with some of the jobs from which I was not fired, I still won't ever darken their doors again.) Even though I have an Ivy League degree plus an MA and PhD, the large majority of the jobs I've held required no college education at all, and of the rest most were part-time without benefits.

I made my first friend and had my first date (same person) when I was 19, in my second year of college. I met my first and only girlfriend, Emily (who is now Mrs. Deutsch), when I was 29 1/2.

In the 6 1/2 years since Emily first told me I may be an Aspie, I've begun major changes in how I see others, how I know others see me and what they expect from me and how to tell when problems may arise, among other things. Now I've dedicated my life to helping fellow Aspies do the same.

The second syllable of Asperger is pronounced PURGE:

P - Perceptions. We often need to respect and accommodate others' perceptions, whether we agree with them or not.

U - Unknown unknowns. That's former Defense Secretary Donald Rumsfeld's classic term for things that we don't even know that we don't know. Even NTs commonly misjudge themselves; pretty much by definition Aspies do it much more often - and deeply.

If someone is willing to be our social smoke detector and alert us bluntly to how we can better get along with others, we should bless them and consult them frequently.

R - Recognize common patterns. If your last three bosses treated you - and few or none of your co-workers - badly...yeah, maybe they had some attitude issues. But the odds are that your behavior provoked those issues.

Remember, even when others behave badly, you are the only person whose behavior you can control. Like any species, you adapt, migrate or die.

G - Get outside your comfort zone. That's both especially hard and especially necessary for Aspies. Work on meeting people, addressing issues tactfully or making eye contact, for example.

E - Execute the plan. Then use what you learned for the next step in your life.



- Written by Dr.Jeff Deutsch, A SPLINT

New NBC Show Parenthood With Asperger Character

8:00 PM Saturday evening came around and I was complaining, again, that there was nothing on television to watch. Most of the channels play old shows on Saturday. That’s when I noticed that there was a new show on NBC called Parenthood. Apparently, it’s been on for a little while and I never noticed.

Keep in mind, I have only watched the one episode. I still don’t have all the character names down or who all the actors are. The two that I recognized immediately were Craig T. Nelson and Lauren Graham. The show is basically about families. You have Craig T. Nelson as the father/grandfather, his grown up children and their families.

What hit close to home with me was the introduction of a child that was diagnosed with Asperger Syndrome in that episode. The father was in denial. The mom was struggling with what she could do to help her child. They had dinner with a family that had a teenage boy with Asperger and the couple was totally out over the top with their approach to treatment. They recommended doing everything at once to help their son. I was like, yeah,

right. Craig T. Nelson’s character gave the advice that they needed to have a plan. Everything can be handled if you just have a plan.

I felt the confusion of the parents. I felt the frustration of the young boy that was not understood. The parents pulled some strings and got in to see a behavior specialist. This specialist confirmed that their child did have Asperger Syndrome. The first thing the father wanted to know was how to cure it. I understand this. My first instinct when my son was diagnosed, was to fix the situation. It was a blow to realize that I couldn’t and I could relate to the father when he realized that he couldn’t

They ended the episode with the father accepting his son and entering his world. It was a nice moment to watch. I look forward to watching more episodes and seeing how these characters develop and the storylines progress. It’s nice to see a show with a child on the spectrum.

Stress-Relief for Families Living with Spectrum Disorders

By award-winning author/ stress-relief expert Susie Mantell

Q: Dear Susie, Our 8 year old boy with Aspergers Syndrome experiences very "jangly" moments and can be quite disruptive at school and home. Do you have relaxation techniques that would help, and might your CD, "Your Present: A Half-Hour of Peace," possibly soothe him into a calmer state at those times? (Signed: Sleepy Mom)

A: Dear "Sleepy Mom," Your journey, and your son's, are not easy ones. But there is growing attention to the complex range of Autism Spectrum Disorders. My own work being in stress management, so it is also advisable to talk with a trusted, knowledgeable medical professional who can sit face to face with your family and recommend how best to proceed. That said, here are few suggestions that come to mind that I hope will bring some comfort.

1. Your suggestion of guided imagery and other relaxation tools is an excellent idea. We receive letters and emails telling us that my own relaxation audiobook, "Your Present: A Half-Hour of Peace," has been used successfully by many parents of children diagnosed with autism spectrum disorders, ADHD or sleep disorders, to soothe children and help them to fall, or fall back to, sleep. The gentle narration provides a focal point for the listener's mind, which can be especially helpful when children are 'stimming' or repetitive or perseverative thoughts or actions seem to preoccupy attention and energy. "Your Present: A Half-Hour of Peace" was originally created with an adult audience in mind, though we’ve discovered through parents that children also respond to the comforting quality, so yes, you might want to give that a try. I have heard that Listening Therapy is an approach sometimes used, and this might be a gentle technique to incorporate. (It may provide comfort to fam ily members as well.)

2. Take a look on my website's Tips page for many techniques for helping caregivers, parents, and for kids cope with stress too. There are many strategies there that are appropriate for you and your little boy, or that you can adapt. As you know all too well, autism impacts every family member, so you all may find supportive stress-relief suggestions. Also see tips for breath work--mindful, focused breathing, which calms and refocuses, providing a focal point where the mind can simply rest.

Remember: When events circumstances are not a choice, perspective is.
'It is not what you look at, but what you see.' -Henry David Thoreau
See: "Just for This Day" by poet Sally Meyer for her remarkable son, Dhylan, reprinted with permission from the author at http://www.relaxintuit.com/tips/259

I hope something here is helpful. and wish you and your very special little guy wonderful support, love and laughter, and many, many "half-hours of peace."
Kindest regards,
Susie Mantell, www.relaxintuit.com

[Copyright 2000, 2010 Susie Mantell, Relax. . .Intuit (tm) LLC. All rights reserved.] Federal law prohibits use of this material in whole or in part without the express written consent of Relax...Intuit (tm) LLC. For Reprint Permission: Kindly email your request for guidelines, pasting in the full text of the specific article you wish to use, to info@relaxintuit.com We'll try to reply within 72 hrs.]

Award-winning stress-relief expert Susie Mantell ...is the author of the deeply soothing relaxation CD, "Your Present: A Half-Hour of Peace,” clinically approved for symptoms associated with stress and sleeplessness, depression and grief, anxiety, P.T.S.D., Fibromyalgia, caregiver stress, cancer, pain, divorce, children with special needs, and addiction recovery. Featured in The Los Angeles Times, NBC, ABC, CBS-TV, Town & Country, The American Pain Society, Hazelden and The Susan G. Komen Breast Cancer Foundation, listeners include The Mayo Clinic, Memorial Sloan-Kettering, The Betty Ford Center, V.A. Hospitals,and Canyon Ranch (#1 Spa.) Customizing stress-reduction for Fortune 500 companies, distinguished hospitals and spas, Mantell has facilitated thousands in relieving health-related, work-related, chronic or traumatic stress. Her multi-sensory, mind-body techniques appear in national media, medical and corporate publications. Susie Mantell's Stress-Relief & Wellness Tip s are intended as an adjunct to, not a substitute for, professional health care. Order “Your Present: A Half-Hour of Peace” and find more of Mantell’s stress-relief tips at www.relaxintuit.com

This Emotional Life on PBS

PBS is coming out with a special that focuses on relationships. It is THIS EMOTIONAL LIFE, a three part series, airing January 4-6, 2010. This series examines how relationships play an important part in our lives. The interesting thing about this series, for me, is that it includes the story of a 29 year old man with Aspergers. His story touched me.

Sam Fabens with VOXGLOBAL emailed me about this series. In the email, he included a Q & A from Dyllan McGee about it. Here it is:

Here’s a Q&A from Dyllan McGee, executive producer from Kunhardt McGee Productions and one of the show’s executive producers, about why the series is important, what’s in it, and how it can help people live more fulfilling lives. Here’s the trailer: http://www.youtube.com/watch?v=HMshm6UpYVE

Q: Why did you think it was important to produce a series like this now?

A: This is the first time a TV experience has really probed deeply into the entire life cycle and range of complex emotional issues that impact all people. Research now shows us that the real key to happiness and resilience doesn’t lie in what we own or buy, but it is made up of so many social attachments and our perspectives on scenarios, among other things. That’s incredibly powerful information to know and to share with others – particularly during a time like this when so many people are really suffering from a lot of stress and anxiety due to the economy.

Q: Why did you want to include a story about someone who has been diagnosed with Asperger’s syndrome?

A: So much of our series is focused on the idea that happiness and emotional satisfaction are linked with the quality of our attachments and connections with other people. We wanted to showcase stories about interesting people – like Jason, who has been diagnosed with Asperger’s syndrome – who experience challenges in making these kinds of connections. We wanted to explore and highlight the kind of social and family support that’s so important to people like Jason in our society. He shared some important things about his life and experiences – like his difficulty reading people’s emotions, and how that impacts his relationships. The whole point is to raise awareness and start conversations – and we’re grateful to Jason and his family for sharing their story.

Q: Do you think the show can help people?

A: Absolutely – our main goal in producing this project was to help people. We included a great cross-section of the latest science, interesting insight from well-known entertainers and writers, and a lot of inspiring and thought-provoking stories from real people in extraordinary situations.

I’ll be watching this and I hope you will too.