Dan Swearingen | November 17, 2014

Ian is continuing to do well attending his class at College of Marin which Sara wrote about previously. As Ian’s first semester ends Sara will write again to relate how things went and what we all learned. In this installment I want to discuss what our motivations and ideas are as we work forward with Ian.

Ian is a medium-verbal autistic and did not achieve a high school diploma. We had choices while Ian was moving through the public school system. Over time we found that it really boiled down to two paths: education or socialization. In pure special education settings (separate classes from the mainstream student body), Ian’s education was maximized. In full inclusion settings, Ian’s social skills progressed but his significant verbal deficits meant that he did not learn much of the curriculum.

This either/or choice is a consequence of Ian’s need for focus to make progress. We have found this to be true in general for other people we work with. In our experience autistics(*) do not do well when trying to learn simultaneously on several different threads. While Neuro Typical (NTs) teenagers might be able to learn Math, History, English, a foreign language, Science, and age-appropriate social behavior all at the same time, we almost always find that people with ASD need to focus on fewer topics of learning to make good progress. Ian’s verbal impairment is significant and he needs to focus on just a few activities to make satisfactory progress.

Since middle school we had unsuccessfully argued with the schools that Ian needed to be able to focus on fewer topics. It was very frustrating for us when Ian’s middle school special education teacher tried our suggestion for a couple weeks, reported great progress but because he did not have administrative support to continue he immediately returned to the same multi-topic approach we all knew did not work as well.

In any case, we knew Ian needed focus. As Ian approached eighth grade we started looking at choices for high school. Ian had been with a large cohort of regular ed neighborhood students since fourth grade. They knew Ian, liked him and looked out for him. Almost all of these students were going to be moving to Redwood High School across the street from the middle school. However, our high school district has concentrated their services for autistics and other special education programs at Drake High School further away and with an almost totally new group of students.

Ian wanted to go to Redwood with his cohort. The District wanted Ian to go to the other school. This presented us with a difficult but clear choice. With all the special education resources at Drake, Ian would have one-on-one support and classes modified to his level. At Redwood, Ian would have no one-on-one support and only a slightly modified classroom experience. The district’s choice would be better for Ian’s education. Ian’s choice would be better for his social skills and learning independence.

The final piece was when Janet and I asked ourselves: will Ian’s education be done at the end of his senior year, or will he need more education after high school? Ian’s language difficulties meant that if Ian was going to get a high school diploma it was going to be a very hard four years. We have worked with other students who struggled hard to get the diploma and most refused to do any more education afterwards as they were tired of the hard grind.

We made the choice that Ian’s education was going to be a long haul. We realized that our goal for high school was that Ian acquire the skills to be able to continue his education after high school. That meant enjoying school enough to want to continue. Ian attended Redwood high nearby and left in 2014 with a certificate of completion.

 

 

 

Frankly, Ian is not fully on board with the plan that he attend community college part time and work part time, possibly for many years. The near term goal is a GED and possibly attending a four-year college afterwards. When asked, Ian’s idea of college and his living situation is based on the movie “Animal House.” He sees himself living with a group of young people having fun.

Besides starting college this semester, Ian moved out to a house nearby with three other autistic young men last month. We’ll write about THAT soon.

* As a parent of a child with Autism Spectrum Disorder (ASD) and as someone who has chosen to immerse myself in this work I will often use “autistic” to mean either “symptoms of the diagnosis of autism” or “a person with the diagnosis of autism.” Similarly I will use ASD to mean either “Autism Spectrum Disorder” or “a diagnosis of Autism Spectrum Disorder.” I have Asperger’s Syndrome and I will often use “aspie” to refer to individuals with Asperger’s Syndrome.

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Janet Lawson, MFT | February 23, 2014

[This is the third in a series of blog posts on the history, development, and methodology of Autistry by Janet Lawson and Dan Swearingen]

One of the key components of the Autistry program is the sharing of skills and learning together with our clients. This modality did not come about by theoretical conjecture but evolved naturally by trial and error as we followed and expanded upon interactions that were successful.

Janet has often been told that she was born to be a therapist. That may be true but it took her a long time to figure that out. One of Janet’s first ‘semi-professional’ experiences as a sympathetic or rather empathetic listener came while she was in grad school and working in Bloomington, Indiana. She was asked to lead an AlaTeen group. Every Monday night for five years Janet sat quietly and listened as teenagers told their stories of struggle with drug and alcohol addiction – their own or their families. Janet found she loved working with teenagers. She resonated with their struggles for independence, their search for identity, and above all, their brutal honesty.

When they returned to the Bay Area and learned that Ian was autistic Janet had no free time to lead teen groups. As caring for an autistic child is all consuming she had given up trying to hold down full or even part-time jobs. But when Ian went off to school, Janet went back to school too. This time for a Master’s degree in counseling psychology. After years of working with Ian as well as talking endlessly with other families with special needs children Janet knew that this world would be her arena for the next few decades. And Janet saw a tremendous need for counseling that came from personal experience with the challenges special needs families encounter — the day-to-day obstacles.

Lunches with Kent

Every psychotherapist in training for their license in California is required to do 3000 hours of combined individual client sessions, group sessions, seminars, and case note-writing. Janet did most of her client hours at local high schools working with teenagers and their families. As one of the few therapists, either in training or fully licensed, with both experience in ASD and experience with teenagers the students with ASD would be referred to her. One of her very first clients was a 14 year-old freshman boy with autism. Kent was highly intelligent and did well in science and mathematics. But he was not very social and reluctantly verbal. When asked a simple rhetorical social question like “How are you?” He would reply, “I am how I am.” And “How was school today?” “It was how it was.”

Kent was not rude, just economical in his responses. He also had trouble formulating complex conversational sentences so he preferred to be curt. He did not want to be called out of class for counseling sessions so he and Janet agreed to meet every Tuesday at lunch. He brought his lunch – a cheese sandwich, a small bunch of grapes, two cookies, and juice. He ate the same lunch every day. At first they spent the hour quietly eating with occasional questions being asked by Janet and only marginally answered by Kent.

One day Kent brought a sketch book and introduced Janet to his imaginary world. He had created several characters based on the shape of a pencil eraser – the pink rubber erasers that you can stick on the ends of pencils. Kent had created over 50 different characters – some based on a mechanical pencil, others on a pencil sharpener. He created story lines, detailed settings and very imaginative names – often the names were puns or elaborations of words.

The characters were stick figures but each had a distinct personality. Kent had a definite artistic talent. He captured expression in the arch of a brow or a crooked smile. Whereas face-to-face with another person Kent seemed to lack affect, the characters in his drawings communicated volumes in subtle simple pencil lines. Janet began to see Kent differently. She looked for the subtle communication in his expressions and found that, like his characters, in his own minimalist way Kent too was reaching out. He was sharing his thoughts and emotions but with expressions that were nearly indiscernible.

Janet began to seriously take an interest in Kent’s creative world and they discussed his characters in depth. They shared online cartoons with each other. Kent had his own online comic strip which Janet followed each week so that they would have common ground to explore. Their sessions together, though never filled with the ‘normal’ therapeutic discussions, were rich with non-verbal exchanges.

Kent and Janet had lunch together every week for two years. When Janet and Dan started Autistry Studios Kent was in the first workshop for high school aged students. At that time Kent was a junior in high school.

Girls Who Love Anime

When Janet finally finished her training hours, passed the licensing tests and hung out her Marriage and Family Therapist shingle, she continued to see teens and adults with ASD. While working with a young woman Susan, diagnosed with high-functioning autism, Janet realized that trying to discuss social challenges and teen-identity issues in a small room, face-to-face was not working. Unlike the verbose AlaTeen kids, Sarah was not able to accurately describe problematic or triggering incidents and she had great difficulty describing the emotions those incidents inspired.

One day, Susan asked if she could draw during the session. Janet quickly found a pad of paper and some colored pencils and Susan not only began to draw beautiful anime-style fairies. And she began to talk. She needed the drawing to express herself. It was as if the two channels – speech and drawing – needed to be activated simultaneously for her to fully communicate.

At that same time the parent of a young woman with Asperger’s called and asked Janet to start a group for girls. The mother was desperate. She had tried every support group from Girls Scouts to Social Skills Therapy but her daughter continued to languish socially and to fail academically. Janet was reluctant to start a group as they are generally difficult to schedule and take enormous amounts of time to prepare. But the mother was so insistent and her anguish so genuine that she could not say No.

The first session Carrie sat in the office, her head down, looking at Janet over the rim of her glasses. She answered questions without elaboration and in a rather distracted fashion. She had obviously been through the therapy wringer and knew the drill. When Janet asked her what she liked to do most she answered, “Draw”. When Janet responded that she would love to see Carrie’s drawings, Carrie brought out a sketch book. Janet expected Carrie to show some of her work but instead she began to draw and quickly created a sketch of a young girl with large innocent eyes in a very sexy outfit.

Though Carrie’s drawings were more sophisticated than Susan’s — and less innocent, she nevertheless seemed quite similar to Susan so Janet asked if they would like to form a small group. This tiny group was the starting point for the development of Project-Based Therapy and the inspiration for Autistry Studios. Every week we drew together, ate snacks, and talked. The girls drew primarily in anime style and we named the group Girls Who Love Anime.

As Dan and Janet delved deeper into the subculture of anime they discovered that Susan and Carrie were not alone. Many ASD individuals are attracted to anime. They love the simple drawing style and find deep meaning in the restricted range of iconic emotional expressions. Many people on the spectrum often cannot decipher nuanced human facial expressions and are therefore challenged by personal non-verbal communications. In the anime world they quickly learn the simple range of expressions and their associated emotions which are used consistently across the genre. Often for the first time they start to understand emotions and their meanings in the context of narrative. They can fully participate in the communication. They can engage in the stories.

Janet wanted to challenge the girls to take their drawings to a new level. She asked them to create in 3 dimensions. Susan created a plushie of her favorite character from Super Robot Monkey Team Hyper Force Go! Carrie designed and made a beautiful gold dress.

Doing projects together allowed us to experience what barriers were preventing these talented girls from being successful. We encountered executive functioning issues – the inability to make a plan and stick to it. They would become lost in the details losing sight of the larger picture. We also encountered the effects of perseveration on forward progress. The girls would often become fixated on a character or a theme and it would be difficult to move to a new project. We experienced cognitive distortions such as rigid thinking, over-generalization, over-personalization, and other thought patterns that impede positive progress and social integration.

It became clear that by working on projects with our clients allowed us to see, feel, understand, and experience their world in a way that sitting in a room doing ‘talk-therapy’ would never be able to do. Because the girls were interested and invested in the projects they had motivation to solve the issues that arose.

Night of the Living Dead

Carrie was also very interested in Anime Music Videos (AMV). These are fan-made cuts of an anime film making a short music video with the cuts synched to the music. She watched these all the time but had never been able to make one herself. Dan was not (and is still not) an anime fan but he and Carrie compromised on using footage from the original Night Of The Living Dead (now in public domain) set to Marilyn Manson’s cover of Sweet Dreams. Their goal was to make their AMV in one afternoon so that Carrie could experience all the steps of the project end-to-end.

Over the course of an afternoon they completed the video and uploaded it to YouTube. Carrie loved the finished product and this was Dan’s first experience working as a mentor one-on-one.

The project was a success. We later realized that the key to this experience was:
• choosing materials easily obtained or already on hand. In the first session, it is important that external obstacles are minimal: you want to see the student’s internal issues.
• being able to finish that first project in one sitting – a small sample sized project. The real product of the session is a working relationship which lasts beyond this one session.
• demanding acceptable quality. It is essential that the student be proud of their product.

The lessons we learned from these very first clients became some of the fundamental principles upon which we built the Autistry programs. From Kent we learned that creating meaningful relationships with ASD individuals takes time and patience. Trust does not come easily as, generally, they are not accustomed to people understanding their world. Susan and Carrie helped us to fully appreciate the importance of breaking out of the talk-therapy box. With them we learned that helping a client discover their strength and develop their talents is the most effective way to support their becoming independent.

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Janet Lawson, MFT | February 21, 2014

[This is the second in a series of blog posts on the history, development, and methodology of Autistry by Janet Lawson and Dan Swearingen ]

Autistry Studios grew out of our experience as parents of an autistic son. Looking back, there were particular experiences that not only led us to create Autistry but also shaped the fundamental design of the program. In each of the following stories there is a common theme – a problem to be solved. In each case we thought hard about a solution and when those solutions worked, we found that the implications and the consequences of the decisions we made were often far larger than we initially realized. These experiences shaped much of what we do every day working with individuals of all ages with ASD. Our documentation of these events is sometimes vague and we apologize for that. For several of these events it was only much later that we realized their importance and, as we are not compulsive documenters of our daily lives, little details may have been forgotten. But we strive to be good storytellers and we hope that suffices.

Daring the Tantrum with Ian
If we had realized at the time how important this particular interaction with our son was going to be we would have done it earlier — and documented it better! When Ian was 9 years old there was a particular something he would do routinely after dinner – at this point we cannot for the life of us remember what irritating piece of ASD stubbornness it was. For the sake of discussion let us say that after dinner every night Ian insisted that we turn all the lights off in the house and retire to our bedrooms while he watched videos in his room. The point is that it was a ritual that was not flexible, not functional for the family, and Ian threatened to blow up into meltdown if we did comply.

We have come to see that this is a pattern of ritual experienced by many families with an ASD child. The signature is “I get to do this thing I want, when I want, the way I want or I will blow up! And make you [pick all that apply:] embarrassed, scared, afraid the neighbors will call the police, etc.”
After some time we realized that this was not getting better and we feared that Ian was not going to grow out of this particular habit. When we thought about it more, there were probably a dozen other rituals where Ian was doing the same thing: “Do what I want or I’ll blow!”  Ian, like any smart human child had learned to have a measure of control over his world by threatening an angry or uncontrolled meltdown if he did not get what he expected. We think all children do this to some extent but an ASD child’s meltdown is the stuff of legend, as is their ability to be stubborn.

I know we got ourselves into this situation by inches. Over time it had grown into a real problem so we are very sympathetic to other families who find themselves in the same position. After some discussion we chose the after dinner ritual as the place where we were going to draw a line and insist that Ian give up this ritual. We were going to Dare the Tantrum.

Why would we ever consider doing this? The biggest reason was that we felt we should not continue to teach Ian that he could control us, or his school, or anyone in his life, by threatening a tantrum. We realized that in the end, it would be very destructive for Ian to be allowed to continue in this fashion.

We had to firmly move things to a better, more constructive place. We basically scheduled a fight with our son. For a couple nights in advance we warned and explained that the ritual he wanted was not helpful to mom and dad and we gave him several alternatives. He was not interested in compromise.

We will not call what we did “calling his bluff” because ASD kids do not bluff. The next night we drew the line. And Ian blew. Dan physically moved Ian back to his room and let him continue to tantrum. Again, Ian was 9 so we were able to physically manage him without damage to us or him. Ian yelled, screamed, and threw things for about 90 minutes until physically exhausted. We allowed him to do one of the alternatives we had offered and he finally went to bed.

The next night we stood our ground again and this time he tantrumed for 20 minutes.

The next night after that he did not challenge the boundary.

Within a few months we realized that we had crossed into a new and wonderful place with our son. Ian was happier, calmer and more loving. Almost everything was going smoother with him. In the years since that time Ian has not had a single full power meltdown. He still complains, still yells back at us sometimes, and still can be very stubborn. But the out-of-control, the-neighbors-are-going-to-call-the-police meltdowns have been managed away.

From this we conclude that although Ian had been successful in managing us by tantrum, this success did not make him happier.

Or more secure. In looking back at Ian before this intervention we have concluded that Ian was feeling insecure and many of his old behaviors can be seen as insecurity, neediness and testing boundaries. Testing us.

Consistent with what many researchers have found with NT (neuro-typical) children, we strongly feel that appropriate and consistent boundaries are key to a happier and more stable child. Daring the tantrum is not easy. It is painful to hear one’s child screaming in seeming agony and there is a tremendous desire to give in and comfort the child. It helps to remember that this is a test and that the child needs to feel the strength and solidity of the boundary you, as parents, provide in order to feel safe. A child who feels safe can internalize that sense of safety and turn it into appropriate confidence and self-assuredness.

Appropriate boundaries mean that the rules you are imposing are not arbitrary, follow some sort of consistent logic, and the child understands them.

Consistent boundaries mean that once you have defined a boundary, you must not in any way signal that the child can overcome the boundary (overcome you), by tantrum or sheer stubbornness. Additionally, everyone in the child’s life must adhere to the same boundary (We discuss this more in later sections: we find that inconsistent boundaries across different environments and with different adults in a child’s life teaches them to lie and be sneaky).

Do this when they are still small! Now that Ian is adult size, we also realize how important it is to settle this aspect of the relationship with the child while they are still physically small. An adult with adult strength having a meltdown will often require police involvement and involuntary commitment to a psychiatric facility. This has happened to other families.

Ian still pushes back when he does not agree with us and he can still be very stubborn but he is now forced to honestly negotiate with us. When we can, we work out a compromise with him. When we can’t compromise Ian has leaned that he must accept our decision because in the past, Ian had called our bluff and found we weren’t.

Arthur’s Gold Rush
One of the greatest lessons we learned as parents was the importance of entering our child’s world rather than forcing him to be in ours. Once we accepted his context we could communicate even abstract ideas and he could communicate back to us his understanding of the world. This brought rewards from unexpected places.

When Ian was in fourth grade it was time to learn about the California Gold Rush. Ian was mainstreamed part time into a fourth grade class. He had very low verbal ability compared to his classmates and the teacher and aides told us Ian was excused from any projects on this topic. They had no idea what he would be able to comprehend or accomplish.

We were frustrated with this situation. The school had no expectations that Ian could do anything like the other students. As long as Ian behaved, they were happy to have him. We could tell in our communications that they did not think Ian was very smart.
Without language, it is extremely difficult to learn some topics. History, especially in the past beyond the lifespan of any relative Ian knew was very hard for him to understand. Ian loved the Arthur the Aardvark series of books and videos. We had the idea of working with Ian to make an Arthur adventure that would teach Ian about the Gold Rush. We took famous gold rush photos and Ian traced those and substituted Arthur characters for the people in the photos. We made “Arthur’s Gold Rush Adventure”. Ian understood the story because he knew the characters – they were part of his world. He was very proud of his report and got an A+.

This reinforced our belief that you need to find a way into your child’s world and push from that place. It also established for us that our child’s work, more than his words, would establish and maintain his “personhood.”

Our goal was simply to help Ian learn something comparable to what other students in his class were learning. The completed project also had some unexpected powerful positive side effects. At the next open house, we saw other teachers, students, and parents looking at Ian’s project in delight. We saw the most important thing that Ian got out of making the story: a huge change in how other people him.

Because of that success, the teachers had higher expectations for Ian and Ian worked harder to meet those expectations. His fellow students saw and appreciated our son’s quirky funny view of the world. This work gave Ian a way to communicate his personality and abilities beyond his limited verbal capabilities.

Traffic!
One day when Ian was 10 or 11 we were driving a client of an early Autistry program home. This client was a 20 year-old medium verbal autistic woman. We got stuck in traffic and Ian started complaining loudly and threatening a tantrum. Our client got very anxious and upset. We realized Ian did this routinely in traffic but we had grown used to it and ignored it. It took having a sensitive client in the car to for us to realize that our acceptance of Ian’s tantrums in traffic could not continue.

That evening we informed Ian that he had lost his computer privileges until he could behave himself when in our car in heavy traffic. He promised never to do it again. But we said that promises were not good enough and that he would have to show us he could handle the frustration of traffic. He was VERY unhappy and upset with us. But he thought about it.

The next day Dan came home from work and Ian ran up to him and said “we need to go find some traffic so I can get my computer back!” Dan turned around and took him out to find some heavy evening traffic. Ian sat quietly in the car the whole time. Ian got his computer privileges back and has never tantrumed in traffic since. We were happy — and shocked it had worked.

The lesson to us: it is important to create a dynamic where the child practicing the desired behavior grants them the privilege they want. Traditional punishment is based on focusing on the “bad thing:”  “I will take away [thing they want] because you did [bad thing].”

We have found that this mode of discipline often does not work with ASD children. It seems to make them fixate on the bad thing, and fixate on what you took away, and does little to get them to fixate on behavior that would make things better.

Instead we suggest trying “You have already lost [thing you want]. Do [better behavior] for [specified amount of time] and you will get [thing you want] back.” You are also saying “use your brains and abilities to get what you want back.” We have found that the child always understands the implicit “if you do [bad thing] again, you will again lose [thing you want].

That Ian was able to challenge himself to tolerate his traffic frustration encouraged us to have higher long term expectations for him. We realized that for Ian when presented with a desired goal, given defined boundaries and appropriate support he could change negative behaviors.

We began to wonder if our personal parental lessons could be of value to other families.

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Janet Lawson, MFT | February 20, 2014

[This is the first in a series of blog posts on the history, development, and methodology of Autistry by Dan Swearingen and Janet Lawson]

We are often asked why we started Autistry Studios. The answer in a word: Ian.

Our son is autistic and his autism has driven much that we have done and learned. Ian was born early in 1995 while we were living in Bloomington, Indiana. Dan was a Ph.D. candidate at Indiana University studying Astrophysics. Janet was a librarian at the local public library and was working on her Masters degree in Library and Information Science at IU. Towards the end of the pregnancy Janet’s blood pressure started to increase and she was diagnosed with preeclampsia. As her due date approached her doctors worked to induce a normal delivery. After nearly two weeks Janet’s condition deteriorated to eclampsia and Ian was delivered by emergency c-section. Ian was full term and a very healthy baby at birth.

But as the months passed he began to miss the usual milestones of speech development. We had one of those “What to Expect…” books and noted with increasing worry and dread each “normal” milestone he missed. He did not babble in a speech-like way in the early months. He was not drawn to noise-making toys nor did he imitate different speech sounds. He seemed totally mystified by games of Peek-a-Boo. But he always smiled. He made eye contact. And he loved to be held. Ian seemed to communicate without words. And though we thought his utter fascination with cupboard door hinges, the pliability of a sheet of paper, or the concentric ripples in a dog’s water dish was a bit eccentric we simply chalked it up to being the son of a scientist. We took comfort in the stories that Einstein didn’t speak until he was 3 years old. Even though Ian never measured up to the What to Expect timelines he nevertheless developed into an attractive, engaging and affectionate child.

For financial reasons Dan quit school before finishing his Ph.D. but found that his programming skills were in very high demand back where we grew up in the San Francisco Bay Area. We moved the family to Marin County in 1997. Ian was two and a half. We did not know any pediatricians in the area so Janet somewhat randomly chose the first one found in the health insurance providers list. This doctor happened to specialize in developmental pediatrics and their first appointment, a simple well-baby checkup, stretched into nearly three hours and ended with the doctor solemnly stating: “I think we need to consider the possibility that your son is autistic.”

The news brought both agony and a sense of relief. We knew little about autism and that which we did know was frightening. Janet had read a few books on autism as they passed across the checkout station at the library. But those books contained stories of children living in a bubble world, uninterested and seemingly unaffected by the people around them. Ian was always aware of other people. Though at parks he did prefer to study the tires of parked cars rather than play with the other children in the sandbox. So when the doctor diagnosed autism we immediately had a vision of a child forever lost to us. But there was also a part of us, deep down that knew Ian was different. Having the doctor validate these feelings with a word – autism, actually gave us a certain peace. But, it also set us on a path to learn whatever we could, about autism and about our very unique little boy.

Soon after Ian’s third birthday we made an appointment with Dr. Bryna Siegel. Dr Siegel was, at that time, the director of UC San Francisco Autism and Neurodevelopment Program. We had had the preliminary diagnosis from our local pediatrician but, like most parents, we wanted a second opinion. After several hours of testing, Dr Siegel came back with a diagnosis of autism. Along with her reputation for being a fine clinician and an expert in autism, Dr. Siegel is known for her direct and even blunt presentations to parents. She lived up to that reputation in our meeting. She said that Ian was definitely autistic and that she did not consider him to be in the upper 20% of autistic individuals who would live independently. She gave the example of Temple Grandin only to say that Ian did not seem to be like her.

She considered Ian to be a “low-functioning autistic”. The worst diagnosis they give. Dan remembers that the only literature he could find was that people with that diagnosis had an 80% probability of being institutionalized as adults. At that time there was very little literature to look at and none was particularly encouraging. UCSF had a list of many things they wanted Ian to do with them but we quickly saw that all they were interested in was studying Ian, not treating him. The lack of guidance as to what we should do was very upsetting to us.

But Dr Siegel also said that it was difficult to tell how a three-year old would develop and that a lot rested on how well he could learn. And she remarked on Ian’s charming temperament and his engaging personality. “He is very attractive and that will help him enormously at school. Teachers are going to love him.” And they did.

When it became obvious that caring for an autistic child was a full time endeavor, Janet gave up trying to hold down high-powered, high-paying tech or film industry jobs and concentrated on creating a quiet, nourishing environment for Ian. As parents of autistic children know only too well this was a round-the-clock job.

Ian, like most young children, loved Winnie the Pooh. When he first began to talk he would stay up all night reciting long passages from the Disney movies. His lilting sing-song voice was not a good lullaby so Janet was up all night with him. So she too memorized the Winnie-the-Pooh dialogue. One night as Ian recited the well worn lines Janet took the part of Tigger – “The wonderful thing about tiggers, is tiggers are wonderful things…” Ian whipped his head around, looked her right in the eye…and then burst into laughter. She had entered his world. That was the first night he fell asleep before 3am. Janet had found a way to connect with him in that very special world of his imagination.

Years later, when she became a therapist this became her primary method – to enter the world of her clients, join with them in their inner dialogues, and support them as they enlarged their worlds to include others.

The Threat of a Cure

As the parents of a newly diagnosed autistic child we entered a world where it felt like every week brought a new Thing We Could Do to Cure Our Child. Music! Horses! Computer games! No computer games! Magnets! We looked into all of them. Everyone we knew sent us literature they had found. “Have you tried….?” There was constant guilt that we were not doing enough. Constant frustration when the weekly “cure” turned out to work on ONE child in the entire world. And then friends would keep sending us information about that same cure for the next month. We came to call this: living with the threat of a cure (that you did not take advantage of!).

Some things helped and we are thankful for them. Going to a gluten free-dairy free diet did help us tremendously. The diet made it possible for Ian to sleep through the night without meds and that was the year he learned to read because he was actually able to attend to lessons. We tended to shy away from the programs which required working Ian huge hours. We stuck with things where he would work hard and then have sufficient time to play on his own and with others. We found that consistency was the best antidote for anxiety. We tried never to be late picking him up from school or appointments. We made our lives as regular as possible –eating meals at the same time every day, going to bed and getting up at the same time, and keeping over-stimulating events to a minimum. Our world became smaller. Friends and family found us boring. But Ian stayed relatively calm and happy.

In Ian’s schooling we generally received good service by collaborating with the districts as best we could. We tried wherever possible to provide extra help and materials to support the classroom teachers. And we mostly managed without huge legal battles – that is not to say that there were never heated negotiations. But the outcome was always agreed to be in Ian’s best interest. Ian is currently a senior in high school and will graduate with a certificate of completion with the same group of kids he has been with since fourth grade.

Ian was born with autism but he was also born with a charming and engaging personality. It has been our job as his parents to protect that lovely person as we also help him understand and accept his autism.

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