But I’m back here today – because I woke up this morning from a really weird dream brought on by my daytime worries.  Even if the dream involved Johnny Depp (more on the dream, later),  obviously I am overwhelmed and stressed  – probably like many of you reading this. And I wanted to share something I hope will be helpful.

After I woke up from my dream (and got over the initial excitement of having visited with Johnny Depp while still in my own bed) I decided enough was enough, and that I had to start walking the talk I give autism parents about taking care of themselves.

So I decided to follow the advice of  Chris Brogan. I received an email describing how in the last few years Chris has skipped the tradition of creating New Year’s Resolutions (soon forgotten) and instead he  creates  three words that describe what he wants to focus on for the coming year.  I thought that was a great idea and could help my stress level.

Here are my three words: (none of which are Johnny or Depp):

Produce:  I have great ideas, and I follow through when there are clear-cut deadlines ( for a publisher or a speaking engagement), but my own professional projects (AutismCollege.com)  and  personal ones (exercise,  develop my personal relationships, mentor my autistic son Jeremy in reaching his life goals) don’t get completed in a timely fashion.  So this year, I will produce the projects I have identified as crucial and dear to my heart. Which takes me to my second word…

Flow: In order to have more time to produce, I need to eliminate distractions and clutter in all areas of my life. I’m interested in so many things and I easily get distracted so I am learning to have blinders like a racing horse does and focus on the finish line. Horses can still sense what they may not necessarily see, and I hope I have the same instincts when necessary.

Collaborate: Often I am so busy with outside deadlines that I don’t make the effort to spend time with people who I could effectively partner with to reach mutually beneficial professional and personal goals.  This year, I will focus on collaborating with like-minded people who have similar goals.

Hopefully, what I’ve shared is helpful to you. However, I know most of you just want to hear about my dream involving Johnny Depp (rated PG). So here it is:

I dreamt I was visiting my daughter, Rebecca, who was staying with a musician friend, helping him break into the music business. (Rebecca is a volunteer DJ at the UC Davis radio station).  Johnny Depp was staying there as well (big surprise!). While I’m there Johnny asks Rebecca to help him with the computer to hear an on-line training course that is discussing streams of income and sales funnels and handling your wealth.  I am nervous meeting Johnny, so I try to make conversation  about how Rebecca could use information  like that because she is having such a tough time finding a part time job (reality) while at college, and could use money, and as I continue talking I realize that I sound like I am asking Johnny Depp for money and for a job for Rebecca, which I am not. I’m just having a bad case of  foot in- mouth disease.  I feel really stupid. Only my daughter was more embarrassed than I was.  We climb into a small boat to reach the small stage where Rebecca’s musician friend is playing, and getting out of the boat I splash my husband’s best friend from New Jersey, and his wife and practically drown them. Embarrassment after embarrassment. You know the feeling.

That’s my dream. So this morning I woke up, wrote PRODUCE, FLOW, COLLABORATE on a piece of paper and put it on the dining room table (center of the house) and every time I do something now I ask if it fits in with my goals. I’ll keep you posted on how my three words work out.

What are you focusing on this year?

If you are still reading this far and you know Johnny Depp, tell him I’m not asking for money, but if he needs info on autism, tell him to check out my books and websites, and to call me if he has time for lunch. We could collaborate on something. Hopefully, his good looks won’t be too much of a distraction.

Best wishes  to you and your family for 2012!

Geek Dad book

I’m not trying to out any Geeky moms or Geeky dads for that matter (notice I haven’t mentioned autism or Asperger’s Syndrome). But I couldn’t resist posting this – my publisher offered to send a free book to  a person of my choosing -  and I thought it would make a great present for winter break – lots of time to try stuff out, right?

I am not considered a Geek, yet I have always loved cool activities to do with my kids. I have always completed activities, they just never looked or turned out the way they were supposed to.  Let’s face it, I’ve always been a geek wannabee.  This book, Geek Dad: Awesomely Geeky Projects and Activities for Dads and Kids to Share by Ken Denmead speaks to the inner geek in all of us. Ken is the editor of GeekDad, a blog on Wired magazine’s Web site.  A professional civil engineer, he lives near San Francisco with his two sons, who are both geeks in training.

Here is a great book and I can send you a free copy. Just write a comment below (or send me a private email if you are too shy) within the next 48 hours, and I will pick one of you to get a copy from the publisher for free.

Meanwhile, here is  an  activity from the book – making coloring pages:

Because there are levels to artistic ability and interest, I’ll show you two different coloring pages you can make. First, the classic dot-to-dot, then coloring sheets. They are all made from images you can find online or scan into your computer from sources at home.

Dot-to-Dot Coloring Page

To start, you have to pick the image you want to turn into the coloring page. For dot-to-dots, it’s going to be a lot easier to select simple images, though if you’re patient and want more detail, you can go for the gusto with more detailed pictures. But dot-to-dots are great for younger kids who are learning about staying within the borders. And they love to be amazed by what they can create by drawing a series of lines between dots.

For this example, we’re going really simple—an image of the sigil of the Rebel Alliance.

(Advisory: If you are reasonably experienced with graphics software and know what a layer is, you can skip down a couple of paragraphs to the one that starts “Select a pen . . .”.)

Assuming you’re a geek, we are going to figure you have some manner of graphics software, probably for touching up pictures from your digital camera. Common (and pretty good) examples of such software include Photoshop Elements (the cheaper, easier-to-use version of the industry standard Photoshop) available on Mac or PC; Pixelmator for the Mac; or GIMP, which works on PC, Mac, or Linux and is FREE FREE FREE. Maybe you haven’t played around with the software that much. If that’s the case, here’s a quick lesson about the first feature you’re going to use.

A layer is a standard concept in image editing software. Conceptually, it’s very simple. Imagine if you took a printed picture and laid a piece of tracing paper over it, and then copied the features by hand on that tracing paper. Well, a layer is just like tracing paper, only it works digitally on the computer, and you can have as many of them as you want.

Step 1: For this project, you open your base image in the editing software of your choice. Then you  add a layer. Most of these pieces of software have a menu actually called “Layer” from which you can “Add a Layer.” Once you’ve done that, there is a perfectly transparent layer of digital tracing paper on top of your image, upon which you can now trace, without affecting the original picture.

Step 2: Select a pen or pencil tool and a fairly small brush size to make your dots with. Draw black dots all around the edges of the image, at relatively even intervals. Straight lines need only one dot at either end. Curves need more so that, when they are connected, they will better re-create the curve.

Step 3: These programs should have a separate control window that shows all the layers in the current project. From this window, you can now “turn off” the layer with the original image on it so that you see only the dots.

Step 4: If you want to go all the way, you can also use the program’s text feature to add numbers next to each dot to give your artist a sequence to follow. Or you can just save this file and print as many of them as your kids want to color, letting them be creative and decide how to connect the dots.

Coloring Book Pages

Obviously, older kids and those with more advanced coloring skills are going to be hankering for something a bit more challenging than connect-the-dots. What’s great is that these graphics programs have filters that let you kick out coloring pages by the ream with only a couple of clicks. They require even less work than the dot-to-dots.

Pick an image. For this example, I used a snapshot I took of my classic Nauga (http://www.nauga.com/promoitems_nauga.html) in my office. I opened the image in Pixelmator and then used “Filter-Stylize-Line Overlay” to automatically find the edges in the image and drop everything else out, making a perfect coloring sheet (there are settings you can tweak to get it “just right”).

In Photoshop Elements, the process is nearly as easy. Open the image, and use “Filter-Stylize-Find Edges.” Then use “Enhance-Convert to Black-and–White” to drop out the colors, and you have much the same effect.

In GIMP, you can try “Colors-Desaturate,” then ”Filters-Edge Detect-Neon” and “Colors-Invert” to get a similar effect. You may need to play with some settings to get an optimal result (and you can save those settings for future uses). GIMP is just as powerful at the other programs in many ways, but it is not quite as user-friendly, so there’s a bit more of a learning curve.

Once you have the technique down, you can whip these out en masse and build your kids (or get your kids to build) their own coloring books, using images they find online (Google Image Search is excellent for this, though make sure you keep an eye out for inappropriate content; or try the Web sites for the cartoon shows they like—Disney or Nickelodeon) or scans from other books or sources.

One other way to do this—with slightly less creativity (and therefore less geek factor) but without the need for special software—is the Coloring Page Maker at the Crayola Crayons Web site: http://play-zone.crayola.com/.

This past week, I finally made it to the RoadRunner store to buy a pair of running shoes. I have not been getting my normal amount of exercise (walking or elliptical, plus core strengthening) and I was feeling it. Lethargic, less energy and putting on weight. And when I did exercise, my sneakers were so worn I was worried about my back and left right knee (go ahead and laugh if you are under 35, you’ll soon understand what I’m talking about….). I knew it had been a while since I had bought a new pair – but when I got to the checkout – I was told my current sneakers were purchased in July 2009. YIKES!

How did I let exercise – the one thing that keeps me healthy and sane (OK, maybe not sane but at least behaving appropriately in public settings) slide off my schedule?

Upon reflection, what has happened in the last two years is that I had put myself on the bottom of both the “scheduling support people for Jeremy list” and  the “to-do list.”  Parents and educators,  you know what I mean – you all do it. When you have special needs children your life can get swallowed up by your child’s or student’s needs.  I have been squeezing in my writing (ie paid work), my socializing (ie refreshing my social skills) and my exercise (ie keeping healthy) around Jeremy’s needs and everyone’s schedule.

I often tell parents and educators  during my presentations that they have to take time for themselves. Like the cabin crew tells you on the plane – you have to put your oxygen mask on first before you can help anyone else. Same goes for real life. If you don’t take care of yourself, no one else will, and you won’t be  any good to anyone else. So please, do as I say and not as I  have been doing.

Now, I’m putting my priorities first on the schedule. Everything else is secondary. (At least till the new shoes get a little mileage on them).

I first posted this article on the Examiner.com last August (2009), but it is still useful information so I am reposting now.

On August 15th,2009, I presented at the annual “Back to School”  Autism / Asperger conference in Pasadena and had the opportunity to refresh my memory on some good readiness skills for the start of the new school year. A2Z Educational Advocates based in Pacific Palisades had some good tips to share in a “Back to School Guide” they were handing out. Following are some tips from both the “Back to School Guide” and from my book Adolescents on the Autism Spectrum to help the transition go smoothly for your teen or student:

• If  your student is moving to a new school or classroom, take photos or videos of the new environment, including the areas he/she will be walking through. If possible, take the teen to the new location before school starts and practice walking around the empty campus. Have him /her notice some visual landmarks he/she  will be able to see when the campus is full of students, and explain to him/her how to use these as points of references when walking from one place to another.
• Prime your teen by talking to him/her  about the upcoming school year, the teacher and expectations, as well as any fears or concerns your teen has. Creating a photo album together or writing social stories can be very helpful. Even if your teen does not have good communication skills or is non-verbal, he/she can  learn to  understand and make the connection, so it is worth the effort to take the extra time to do this. Going over the appropriate behaviors and social interaction for the school environment can also be helpful. Many students find having a set of ‘rules’  for school behavior helpful. Focus on the positive!
• Help your teen get organized to prepare for the school year.

1. Use color-coded folders to organize the work for the different classes.
2. Get a planner for your teen. Many schools have a homework planner, and your teen can use this to keep track of homework assignments. Show him/her  how to write his assignments in the planner and reinforce him/her  for doing so through out the school year.
3. Designate a spot in your teen’s backpack for forms, notes and so on that come home from school, and make sure your teen and the school staff know where that is.
4. If your teen is fully included in a school that follows block scheduling such as in some North San Diego County high schools (one day is periods 1,3,5; the next day is periods 2,4,6) you may wish to consider having two separate backpacks for the two different block days days.
5. If your teen needs assistance to organize himself and stay organized (as mentioned above), his / her IEP may need to include accommodations, strategies, and goals related to learning these skills. Being able to get and stay organized is an important life skill everyone needs to learn

In my next column, tips on how to make the transition back to school easier for parents and teachers will be discussed.

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

waiting

Here’s one way of teaching the concept of waiting:

• Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting  in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
• Glue a piece of velcro  on the big icon for putting a smaller  icon of requested item on it.
• Have a timer available.
• Have small icons of the child’s favorite items that he likes to request.
• Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
• When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting  is at this point (10 seconds, 30 seconds, 1 minute).
• As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
• Do this many times  whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.

Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time).  Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing.

Donna Williams, Dip Ed, BA Hons, consultant and author of 9 books (Nobody Nowhere, Somebody Somewhere) will present on Meaning Deafness, Meaning Blindness and Body Disconnectedness. Other presenters include Dr. Joshua Feder on DIR/Floortime; Darlene Hanson MA, CCC on Augmenting and Expanding Communication, Rebecca Estepp on How To Start Biomedical Intervention; Lisa Lieberman, MSW author on Finding Quality One-to-One Providers; Debbie Bialer, on Toilet Training; and Peggy Schaefer on Neurulogic Music Therapy, Andrea Macken on Proactive Tools to Manage Challenging Behaviors of Children with Autism; Shannon Schlotman on The role of Occupational Therapy in improving learning and behavior; and others.

“In honor of Autism Awareness month, I wanted to provide practical information on autism for free to all who needed it,” said Ernest Priestly, Founder of momsfightingautism.com. “Many parents have a hard time leaving their home to attend conferences. A virtual conference is the best way for many people to get information they need without leaving their home. I’m glad I can help make their lives a little easier.”

Moms Fighting Autism is a producer of webinars for moms of children with autism. This website provides the tools and services that allow moms to vent, cope, support and learn from each other. According to the Centers for Disease Control and Prevention (CDC), autism spectrum disorders are diagnosed in one in 110 children in the United States. For more information visit www.momsfightingautism.com. For more information on autism topics see the book  “41 Things To Know About Autism.”

Autism: It's A Family Affair

This article was posted on my Psychology Today Blog, The Autism Advocate , on March 26, 2010.

A couple of years a go I was asked to write an article on The Affects of Autism in Families and in Partner Relationships,  for the May/June 2008 issue of  Family Therapy Magazine.  Lately I have been getting emails in regards to autism and marital stress, and I thought I would reprint part of the article here, since the information is still valid. If you are interested in this topic, you may wish to read the chapter on  the financial and emotional stresses of autism on the family that appears in my new book 41 Things to Know About Autism (just published by Turner Publishing).

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations.

Autism: It’s a Family Thing
It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006). Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.

Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

Keeping any marriage healthy takes time, and all too often, time gets swallowed up by the autistic child’s needs. Many children with an ASD have difficulty sleeping, meaning that at least one of the parents is sleep deprived. Usually, a role division takes place as one parent, usually mom, becomes the autism expert, while dad works harder to earn money or opts out. Differences of opinion exasperate an already difficult situation – how much time, energy and money is to be spent on helping the child is based on personal philosophy, and in this the couple may clash. Over time, dad becomes frustrated at the demands of their wives to interact or play with a child who does not know how, and moms become frustrated at the lack of involvements of their partners.

As well, a common pattern among moms is to wonder what they did wrong – drinking or taking medications during pregnancy, exercising too much, allowing the child to be vaccinated, thus adding feelings of guilt to an already stressful situation. Also, the couple eventually feels isolated because they feel it is hard to take an autistic child to people’s homes and are uncomfortable inviting people over.

Sometimes the couple becomes closer than ever, bonded in their shared circumstances. Unfortunately, usually the stress of dealing with autism and all it entails – the constant and necessary advocacy at school, the fighting for services and supports, the added financial burden, trying to handle behaviors and meltdowns at home – becomes a wedge pushing the spouses further and further apart. Overwhelmed, stressed and exhausted, the couple’s communication becomes impaired and even autistic-like, lacking emotion and reciprocity. This can affect other children in the family.

How Therapists Can Help
There many ways in which therapists can help the family unit. For all those who need more information or need access to a support group and are not yet hooked into resources, there are various support groups available in different areas. Check on the websites of national organizations such as the  Autism Society of America, TACA, and NAA.

Couples need to be encouraged to acknowledge and face the emotions of the grief cycle (i.e., denial, grief, depression, anger) and the loss of the child they were expecting, and to work through these emotions. Misdirected anger is often released at school personnel in Individualized Educational Program (IEP) meetings or taken out on service providers, thus alienating the very people who are there to help them.

Encouraging couples to regularly schedule time together without the children is important. However, this suggestion is useless unless the therapist can support them in devising a practical plan for finding the respite help they need.

The lack of qualified babysitters can be a very real obstacle to finding time together or continuing therapy. Working on good communication skills and looking at how they can support each other is important. The couple needs to realize and accept that their partner may react differently to having an autistic child and a different viewpoint when it comes to how much effort and money to put into treatment, as well as what kinds of treatments to pursue.

Encouraging dads to take a more active role with agreed upon treatments, generalizing some of the skills the child has learned through his ABA (Applied Behavioral Analysis) program, helping with structure, limit setting and discipline can be very helpful. For this to occur, dad needs more information and training. Perhaps coming up with some dad-oriented informational materials could be useful. A good on-line support group for dads is http://www.fathersnetwork.org/

References:

Autism Society of America, 2008. “Family Life.” http://www.autism-society.org
Bolman, W. 2006. “The Autistic Family Life Cycle: Family Stress and Divorce.” asa.confex.com/asa/2006/techprogram/s1940.htm.
Sicile-Kira, C. 2006. Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders. New York: Perigee.
Sicile-Kira, C. 2004. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: Perigee.

Self –regulation is a needed life skill  not practiced  by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card.

Let’s  say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back.  What you need to do is teach him to communicate to you when he needs a break,  and allow him  to have  those needed breaks within reason.   Here is one way to do that:

• Take data over a week or so on exactly how long he can work before he gets up and runs away.
• Establish the amount of time he can stay and work without getting up away from the table (ie 19 minutes).
• Make a bunch of break cards. They can be really simple – just take some index cards and write “break” on them. If the student needs a visual, use an icon or drawing of some kind, representing a break.
• Next time you sit down to work, have a timer ready, and the break cards in front of him. At 17 minutes (before he would normally get up and run away) prompt him to give you a break card (having another person to help prompt him is best), then allow him to have a break, telling him he has a 3 minute break, or whatever amount of time is appropriate for that student, and set a timer.
• Make sure he comes back (you may need help with this at first, or a favorite reinforcer back at the table). Keep doing this every 17 minutes and over as many days as it takes for him to get the idea that he gets a break every time he hands you the  break card.
• Then, put a pile of break cards within reach of the student, and give him a break every time he hands you a break card, until you know he gets the connection between giving you the card and getting the break. For some this will happen the first day, for others it make take many days.
• Then, since you know he can sit for 19 minutes, put 3 break cards in front of of the student and tell him he will have only three breaks the whole hour. If he chooses to use  the 3 break cards immediately, he is not allowed any more breaks, as you know how long he is capable of sitting and learning. You may need help keeping him seated, perhaps allowing him access to his favorite reinforcers. Eventually, he will pace himself to use the break cards on as-needed basis, meaning every 18 minutes or so.  (Note: If the student does not ever  want to return to the table, you may want to re-visit your lesson plans. Are you still working on the same lesson in the same way repeatedly? Perhaps the lesson is too easy and the student is bored).

Once the student has mastered using  a break card, you can generalize to other environments and situations.  It’s a great way to give the teen some much-needed control over his or her time, as well as teaching  an appropriate communication skill and behavior.

This was first published in the Examiner.com  on February 6, 2010.

The first time I heard  Dr. Bernard Rimland’s name  was the  day after a visit with my son to a psychoanalyst  for the only treatment on offer for autism  in Paris at the time. The bookshelf in the  waiting room   included  a few copies of ‘The Empty Fortress’ by Bruno  Bettleheim,   who believed that autism was a reaction to bad parenting and expounded  the ‘refrigerator mother’ theory of autism.

Dr. Rimland’s  book,  ‘Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior’(1964),  would have been a  better choice in this psychoanalyst’s  waiting room. In his book,  Dr. Rimland  lambasted  the then generally held view that autism was a psychological disorder, brought on by cold and unloving parents. His conclusion was  that autism was the result of   biochemical defects underlain, perhaps, by a genetic predisposition, but ultimately triggered by environmental assaults. This book grew out of the research he did searching for answers when his son, Mark,  born in 1956, displayed behaviors which are now easily recognizable as symptoms of autism but were rarely seen in those days.

The psychoanalyst I visited informed  me that  my son had autistic behaviors due to separation issues from breast feeding. This she  gleaned form watching my son play with two round objects, and  crawl across the floor  in an attempt to retrieve  one that he accidentally dropped.  Following this Allen Woodyesque moment, and looking for some  useful advice, I called an old friend and former colleague from a state hospital  for the developmentally disabled in California.   She gave me the telephone number  for  the Autism Research Institute, the non-profit  founded by Dr.Bernard Rimland in 1967.

Many  are familiar with  Rimland and know that his autistic son, Mark (now 50 and an accomplished artist),  was the impetus for Rimland making the field of autism his life’s work,  yet few know from where he got his unrelenting fighting spirit.  It most probably came from  one of his maternal uncles.  Rimland  once recounted to a journalist from the San Diego Jewish Journal, “My mother used to tell me about one of her brothers who was a mathematical genius. During the war [World War I], an elderly  Jewish gentleman was being harassed by German soldiers. My uncle interceded because he couldn’t stand the injustice. The soldiers beat him and left him there, bleeding to death. My mother would finish this story by telling me, ‘So don’t be like him!’ Instead, it inspired me to fight injustice.”

Dr. Rimland was born in Cleveland, Ohio in 1928. His parents were Russian immigrants who met in Cleveland, married and had a son and a daughter. World War I precipitated their move to the US, and it was another world war that precipitated their move to San Diego where his father had a metalworking job with Convair.   From the minute he  arrived  at age 12, Rimland fell in love with San Diego. He once told a reporter “Cleveland had been muggy and dirty. I got here and said, ‘This is heaven, I’m never leaving.”

Although a college education was not considered a necessary or worthwhile pursuit by  his blue-collar family, both Rimland and his sister went on to attend college and to earn graduate degrees. His sister earned a Master’s degree in education and Rimland earned a Master’s in psychology at San Diego State University. For those familiar with Rimland’s work and his fascination with research, methodology and the search for truth, it will come as no surprise that Rimland went on to earn a doctorate from Penn State in experimental psychology and research design.

In 1951, after college,  Bernard married Gloria, the sister of a childhood friend. In 1953, after he received his Ph.D. he worked  with the Navy at its Personnel and Training Research Laboratory in Point Loma, San Diego as the director of the Personnel Measurement Research Department.

When his son Mark was born, their tranquil  life changed. “From the moment Mark was born, everyone noticed he was different,”  Rimland  recounted to  a reporter. “He was always screaming at the top of his lungs and nothing would placate him. But no one knew what it was. The pediatricians threw up their hands.”

His wife, Gloria, remembered having read in one of her college textbooks about a child wandering around, staring into space, and appearing not to recognize people. Rimland’s first step into   autism  was into  their garage to find  that textbook  packed away in box with other college momentos. In the book he found the term ‘infantile autism’ that described the characteristics his son was displaying.  Rimland began studying the disorder, only to find that autism was blamed on ‘refrigerator mothers’  by most of the scientific community, mostly due to the work of Bruno Bettelhim.  Knowing that Gloria was an affectionate and caring mother  to Mark and his siblings (one brother and one sister) Rimland found this to be ridiculous. As a scientist, he decided to research everything that was out there on the topic.

For five years Rimland  researched  autism in the evenings after his Navy job, long before the internet and faxes, when even photocopy machines were not easily available. “When I started my quest, autism was no less than an obsession,” he once  wrote.  “I quickly read everything I could find on the subject and hungered for more. This was war. I envisioned autism as a powerful monster that had seized my child. I could afford no errors.”

At the end of five years he had about 400 pages of information amassed. He thought of publishing a paper, but his wife, Gloria, told him he had enough to write  a book. Although the  medical community for the most part ignored his book ‘Infantile Autism’ when it was first published, it is now considered a classic by doctors and psychologists (although perhaps not by French psychoanalysts). An interesting tidbit: ‘Infantile Autism’ was very popular with psychology students and Rimland was once told by a librarian that it was one of the most stolen books off the shelf.

After his book was published,  Rimland started   receiving hundreds of letters and  phone calls   from parents  searching  for answers concerning their children. After  work at the Navy every day, he spent hours  replying to  these queries.  He then started the nonprofit Autism Research Institute (ARI), originally named   Institute for Child Behavior Research,  in order to share the latest information on autism research with those interested. The ARI   became a worldwide network of parents and professionals concerned with analyzing the scientific data for diagnosing, treating and preventing autism.

Dr. Rimland was often at odds with the medical establishment and in the middle of controversy. He was  one of the first  to  conclude that the United States was undergoing an epidemic of autism, that diagnoses rates were climbing, and one of the first to state that mercury and vaccines as well as other environmental and dietary triggers could be a primary culprit in autism.

One of the first treatments investigated by Dr. Rimland was high dose vitamin B6 therapy, and he did this based on reports from parents of autistic children. Stephen Edelson, Ph.D,   Dr. Rimland’s close friend and colleague for many years and now Director of ARI,  told a reporter, “One of the most remarkable things about Dr. Rimland is that he realized in the early days that parents held many of the keys to solving the mystery of autism. From day one he listened to them and respected them – and he followed their lead.”  He went on to say that  ‘It’s a key reason why ARI has always led the way in identifying treatments and uncovering the roots of autism.”

Rimland  was always  putting people he knew in touch with one another if he thought they had something in common besides autism.  After a while, I got used to receiving interesting calls from people  in different time zones telling me  Bernie had given them my phone number.  Whenever  I  heard my fax machine after 10:00 pm, I knew it had to be Bernie sending me a document with some comments scribbled in the margins, either a sardonic remark or an observation about  the contents of the document.  I knew the phone would ring next, and it would be Bernie, wanting to discuss the fax.

One of Rimland’s major talents and accomplishments  was  taking an idea,  getting people together, and putting  that idea  into action.  In the 1960’s he started what is now the Autism Society of America with a few other parents in order to share information, provide moral support and, in large part,  to promote applied behavior analysis – then known as behavior modification.  In the 1990’s Rimland brought together leading researchers from different fields and created a think tank from which grew  the now  worldwide Defeat Autism Now! movement.  Today, DAN! conferences take place a few times a year providing information to parents and training to medical professionals. Currently there are  hundreds of DAN!  trained physicians experienced in biomedical interventions. The idea that ‘autism in treatable’   is an off shoot of the DAN movement and part of Dr. Rimland’s  legacy to all  impacted by autism and their family.

Another of his many accomplishments is serving as the technical advisor to the Oscar-winning film Rain Man (1988). Although it is true that not all individuals with autism have an incredible talent as depicted in this movie, the film created much  awareness about autism in an era when few people had ever seen a person with autism.

Despite all his long hours and importance  in the autism community, Rimland   was always available to   provide encouragement to others, including unpublished and unknown authors.  Although I had contacted the ARI a few times since I was given his  phone number those many years ago in France,  Bernie did not know me personally. Yet, when I sent him my book proposal for  ‘Autism Spectrum Disorders’ hoping for  some encouragement, he called me as soon as he received it and read it. It wasn’t late at night, but it was a Saturday ( the day after I had mailed it), and I remember my disbelief as I heard on the other end of the line “This is Dr. Bernie Rimland.  Are you Chantal? I just got your book proposal and I had to call you right away. This needs to get published. What can I do to help?”

When I first visited Rimland in  his office  in San Diego, I walked  by it a few times before realizing that this dusty  old storefront is where he waged  his daily battle against autism. The storefront  is on Adams Street which is a gentrified and trendy part of town.  ARI fits right in with  the antique book stores,  the vintage   movie theater  and  hip restaurants. Trendy, Rimland was not, but his ideas, the work he generated, the research he supported and published, were. This is where new educational therapies, biomedical treatment and dietary interventions were discussed and where Defeat Autism Now! (DAN) had it’s beginnings.   Inside, the disarray – piles of documents and boxes that covered every inch of floor and desk space -  made me wonder how a man whose office  looked so rumpled and disorganized  could produce such detailed and exacting work. Perhaps the answer lies in what he told a reporter  at the San Diego Union Tribune in 1988, “I will never stop until I have found the answer or die, which ever comes first. I will find the answer, and if living to be 150 is what it takes – I’ll do that, too.” Obviously, Bernie was a man on a mission to defeat autism, and he had no time for the details of every day life such as filed papers and a clean office..

If San Diego feels a little empty  now that Bernie is no longer here, I take comfort in knowing that  his family and ARI are. It is thanks to Gloria, his dedicated wife who took care of Mark,  his siblings and the household schedule,  that Dr. Rimland was able to devote so much of his waking time to research.     At ARI, autism research and sharing of information continues.  Dr. Stephen Edelson,  who   relocated  to San Diego in May 2006,  is now Director of ARI, and    Matt Kabler, Rebecca McKenney,  Mallie Odle, and Sue Field  continue to keep  ARI operations going.

In Paris, this past December, for the fist time, an international conference covering both biomedical treatments and applied behavior analysis took place, organized by the only DAN doctor in France. I miss Bernie, but I take comfort in knowing that before  he passed away, he knew  that his work  was reaching and helping families in this country where the   ‘refrigerator mother’  theory of autism is still  accepted. Marian Wright Edelman,  Founder of the Children’s Defense Fund, once said: “You really can change the world if you care enough.”  Thank you, Bernie, for caring enough, not only for your son  but for all of us.

This was first published in Spectrum Magazine,  January 2007