Estée KlarThe Joy of Autism

I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.

 Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults. 

As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path,  I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.

“We are more like you than not,” says Larry in the following trailer.

That’s for certain.

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Using the title from Kat Kelland’s article in today’s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.

“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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Here in Toronto, I sit on Inclusion Committees. My son has been included in a Montessori classroom but we are going to leave after June. The school gave Adam loads of acceptance and enabled him to bring his aide, his adapted programs, his computer laptop and the like. The school was wonderful in that it was a calm environment that had concrete Montessori materials for him to use.

We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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Now I know first hand what it’s like to feel dark inside — when my child is disorganized and appears to be in pain and cannot tell me. These are the toughest moments when a parent feels helpless. Also frustrating are schools that claim they are there to support autistic children but will not take “non verbal” autistic children. Believe me, the conditions out there in order to participate in society are just plain ridiculous and prohibitive, so I’m going to make a strong plea to everyone — INCLUSION IS NECESSARY. Stop pretending to be inclusive to autistic children if they have to “talk and walk” at the same time. It’s not autism-friendly! Argh.

Yet when I am feeling depleted, I fight it and I will urge every single one of you to do it too. For each one of us has that power, if we can be aware and monitor what’s happening to us inside. It’s important to remain honest with ourselves and then be able to step back from those feelings that can suck us down.

I reach out for help. I call people. I call Adam’s aides and therapists for help when I’m feeling overwhelmed. This is a good place to start. Always call for help and bring in only those who support you and your child in the manner that you need. Do not bring people in who will put you down, make you feel lower or try to fix your child. The most important thing you and your child need are love and respect.

One thing I know FOR SURE, is that there comes a time in life when we really do have to muster every bit of strength we have and resist the calls of the demons. The echoes of The Autism Everyday video and “wanting to drive over the George Washington bridge is like a siren call and this is why this kind of marketing — the kind that exploits and capitalizes on people’s pain — should be illegal in my opinion. It’s not that I disrespect Allison Tepper Singer for her genuine feelings that might be expressed cautiously in a book or another venue. It’s about how those feelings were exploited for capital gain: make autism desperate enough and we can raise money to cure it. Well, I’ve said it before and I’ll say it again: I believe this kind of marketing (consider type of presentation, method of delivery etc.,) is more harmful to parents than ever.

People shouldn’t have to stifle their feelings — that doesn’t help and can an adverse effect. I’ve read Sylvia Plath’s The Bell Jar and it’s all about wanting to die. Beautiful work exists because of honesty and by sharing honest feelings we do not feel alone. There are expressions of hopelessness everywhere — and some quite well-written in fact. Yet these can be used to empower and can also be used as cautionary tales. It’s the latter cautionary tale I wish to dwell upon. People must reach out in a world where literature on loneliness prevails. In this past weekend alone, I’ve found one book on Lonely by Emily White (it destigmatizes loneliness and it is an interesting read) and two articles on loneliness and depression (The New Yorker and a review of White’s book in Saturday’s Globe & Mail). It feels as if we live in a technologically hooked-up world that seems, in fact, to be coming socially undone.

This morning I find the following story on the murder of an autistic child (see below) which is why Autism Acceptance is so vitally, URGENTLY important — not just for parents but for society at large. Society must begin to realize the incredible challenges that families with autistic kids have when they are NOT included and accepted. If we are a community, then EVERYONE IS RESPONSIBLE. I take the story of Gigi (excerpted below…almost there) very seriously. It shows that no amount of money can fix anything. Better spent, is money accommodating autistic children and making sure every child gets a fair shot at being included and educated. If I have one dream, it would for The Autism Acceptance Project to raise more money to advocate more strongly that acceptance is a social responsibility, and to make a place where autistic kids can be fully accepted and receive an amazing education.

My former neighbour Mike Lipkin is motivational speaker extraordinaire and author of several books, one called Strong Mind, Strong Heart, co-written with Dr. Bernard Levinson. I’m very good friends with his exceptional wife and herself an inspiration, Hilary. Re-reading some of his chapters after a very challenging couple of weeks with Adam reminded me how certain thoughts are defeating. Mike reminds us:

“Are you worried about your children’s future? Are you unsure whether you’re on the high road or the low road? Have you noticed that everyone you talk to has a different idea of where you should be going? Are you slightly confused? Are you a little exhausted by having to make so many decisions all of the time? Are you being bombarded by massive change? Is your brain frying?” (p.88)

I think that many parents can say yes to all of these questions. We worry what will become of our children and where they’ll end up.

We want our kids to go to school, to have places to be social and be accepted there too. With so much negative information getting into our brains from the media or from individuals who believe that an autistic person is only better once they are cured, there are real dangers that lie ahead. By reading Gigi’s story (still coming, I promise) it was clear that she was overwhelmed with trying “fix the problem.” When one discovers that autism cannot be fixed or changed, but perhaps begins to appreciate that while there are challenges, there are many advantages, life begins to look a little less desperate. I urge everyone to consider the list of what an autistic child contributes to the family instead of what s/he takes away. While the rhythm of life certainly changes, it is only those who can adapt and learn to walk to the beat of the new drum who will find joy in life. An autistic child demands that we learn to go with the flow.

Mike Lipkin talks about this a bit, albeit not about autism specifically. He talks about how life “will hit you hard like hail from the sky.” (p. 79) He says that people need to learn how to be resilient. “Resilience is the ability to heal after a hurt. It’s the knowledge that bad things happen in this world, but just because bad things happen, it doesn’t mean you’re bad. People who lack resilience are people who invest too much negative meaning in what has happened to them. They obsess on the dark side of their psyche. They focus on why the knocks happened to them. They ask the fatal question:

Why does this have to happen to me?” (p 80)

We all have dark days. Autistic people also have dark days and learning to be resilient is hardest for them. The world is tough and it hits you hard. And you have to fight it with everything you’ve got. Gigi Jordan could not:

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax. Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child. “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.” Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

The kind of hopelessness that Gigi faced might have been averted. Also new as a single mother, I know those nights when I feel I have no one to call upon. In those moments, I know I have to pull myself together again and remember that it’s always darkest before the dawn. It doesn’t have to be Adam that can make me feel this way. It could be a separation, a loss of a loved one.

Mike Lipkin would agree:

“One of the greatest sources of stress afflicting the people who come to us is the discontinuity that prevails everywhere. Just when our clients thought they had finally figured out a pattern, the pattern splintered into pieces again.” (p. 88) That pattern in the autism world is expectation. If we expect our children to change, to be fixed, to adapt easily, we cannot be resilient parents.

Mike suggests that we “sketch out many different paths” in our minds to “create an array of different possibilities.” He reminds us that not only is life unstable but that “as human beings, we have deep-rooted desire for certainty and stability, ” and quotes Francis Bacon who nearly 400 years ago said, “If a man begins with certainties, he shall end in doubts. But if he will be content to begin with doubts, he shall end in certainties.”

In autism too, there are no certainties. The article that talks about Gigi, talks about how the autistic brain “hardens” at the age of eight, and it would make any parent want to cry if you’ll believe it. Again, the article is somewhat misleading. It’s only through misleading expectations that a child must be fixed before the age of eight or all is lost that sends many parents into a tailspin like Gigi. Not only is this inaccurate about autistic people, but it’s this type of limited thinking that can stifle us and make us feel hopeless.

I for one know that autistic people continue to learn and the possibilities are endless as they are for any human being. Instead, as Adam also turns eight this April, I will ask myself how Adam and I can make a difference in the lives of others who are also on this path. For helping others and having this self-ascribed mission helps us. We have opportunities to learn. Every hard-knock and experience is another opportunity to learn. We get our hard-knocks every single day every time a school or a program doesn’t appreciate the special contributions Adam can make to the world. It’s enough to make me want to start my own school — and I know many other parents feel the same way (can we harness this energy??).

Do not listen to the media, but trust that your child is a human being filled with potential. The media will always be there, and sometimes it’s just a good idea to turn it off or give it a hearty guffaw because you will be tempted to feel sorry for yourself and this will deplete your capabilities as a parent. Become the kind of warrior that fends off the demons of the mind and the media. Remember that every child has difficult times and when our autistic children have them, we have to take deeper breaths, ask for help and figure out where this journey is supposed to take us alongside our children. While times seem a little easier for those with special needs, there’s a whole lot of discrimination still going on in our communities. WE have to change this together and support each other in our efforts.

“So once again, here’s one unchanging Life Principle over and over again,” says Mike. “You need a Still Mind to think through the confusion and noise. The only way you can master the cacophony on the outside is to have harmony on the inside. Without inner harmony and quiet, you cannot have a Strong Heart. And without a Strong Heart, where are you going to find the resources to not only brave the darkness, but lead others as well?” (p. 90).

It looks like all of us have to lead. It is also important to stop listening to others and begin believing in ourselves and our children.  We are forging ahead with a new demand in this world and that demand is that our children be integrated into our communities. For this, we need to be brave.

Adam and I had a tough weekend adapting, still, to his new home. So much so that I’ve asked his aide to bring him home early so we can begin implementing fun activities here and teach him some structure. It is my hope that he will swagger on his turf soon and we can both get back on the path of working on our mission which is to help others along in the Inclusion Process.

Yesterday morning, after a very dark night, I stopped my inner fight. I leaned in to Adam (who has difficulty speaking but not always understanding), and modeled language (this means that I say a sentence that he might wish to say himself in order to show him that I understand) while he was trying to soothe himself by playing on the computer. “I’m not feeling well, Mommy,” I said in a soft sweet voice. Immediately, Adam stopped what he was doing, came over and leaned his head of feather-hair into my arms for a hug, and we remained like that for a while. As the day wore on, Adam became calmer and things got a little better.

This morning, the sun came out and his happy grin made me shine inside. If we can hold on, the sun will come out again and the possibilities are endless. But you have to believe it. I hope by sharing a bit of our story and adding some inspirational words from my friend Mike, I have helped anyone who is reading this a little too.

For more reading on how to cope with dark days and how to take care of yourself in order to care for your child:

Still Mind, Strong Heart by Dr. Bernard Levinson and Mike Lipkin (not specifically on autism but created for inspiration)
More Than A Mom by Amy Baskin and Heather Fawcett
Autism Acceptance and Survival Guide by Susan Senator

Other Back to Basics Autism Books:

The Autism Answer Book by William Stillman
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Autism Handbook for Parents: Facts and Strategies for Parenting Success by Janice E. Janzen
Parenting Your Complex Child, by Peggy Lou Morgon

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You know that feeling. You wake up in the morning and you can just feel what kind of day it’s going to be. It happened for me the moment I saw the moon rise over the ocean in Miami at the moment the sun was also setting — that rare “blue moon” that happens only once every nineteen years. I felt that this is going to be a good year. Not without it’s trials, but “good” in the way I can deal with them now.

It’s time to talk about autism again. It’s time to talk about all the services we don’t have, the Inclusion we must have as well as specialized services when we need them. It’s a year to find our commonalities not differences, and where there are serious differences, we have to discuss them intelligently. At the end of the day, whether you are in one “camp” or another, most of us want our children to be happy, healthy and as independent as possible (but it may not happen and we have to make the best of that too). As a mom who is watching Adam grow, we need to teach more things to him this year, mainly communication. We will have more assistance using new programs and devices this year because I have sought it out from others. I have realized that I just can’t do it all alone, but I know when to reach out and ask for help. It’s a year where mom is “back,” (she was dealing with other business last year), and wants to provide Adam the best education he deserves. I hope we can all work together. We gotta be cool, we gotta be wiser. We gotta be tough, we gotta stay together….

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The Atlantic (November 2009 issue) has featured Thorkil Sonne, CEO and Founder of Specialisterne in the article Brave New Thinkers.

“After his son Lars was diagnosed with autism in the late 1990′s, Sonne had an epiphany. Autistics tend to have poor social skills and difficulty response to stress or changes, which makes finding work a challenge (one study suggests that only 6 per cent of autistic adults have full-time employment). but Sonne realized they also tend to be methodical, possess excellent memories, and show great attention to detail and tolerance for repetition — in other words, the might make excellent software testers. With this in mind, Sonne launched Specialisterne, in Copenhagen, in 2004. Thirty-seven of its 51 employees have autism…The firm now pulls in $2 million a year in revenue and serves clients like Microsoft and CSC. Sonne refuses to run the company like a charity: he competes in the open market and aims to make a profit. This makes government support unlikely, but it may lead to a sustainable new model for companies with disabled employees: Harvard Business School now uses Spepcialisterne as a case study in social-enterprise business. People on the autistic spectrum are not super human memory machines, but neither are they incapable of work. Sonne treats them as employees with strengths and weaknesses that smart employers should respect — and capitalize on.” (The Atlantic, November 2009, p. 68).

I know a lot of business people. Some who are very close to Adam who I hope will take serious consideration of employing autistic people, since software development is also their field. It makes me want to visit Sonne’s facility.

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We all know the many obstacles to a truly inclusive classroom. First, many educators don’t really understand how to make it all work. There is no understanding of “universal design.” (please cut and paste this link into your browser for a read on Universal Design: http://snow.utoronto.ca/index.php?option=com_content&task=view&id=409&Itemid=380).

While many schools and communities may be unable to argue with the idea of inclusion, and some have begun to include people with disabilities into the classroom, most have not been able to foster an accepting an accommodating environment that would make the classroom truly inclusive.

Well, if we learn to do by doing, we can also learn from others who do. At www.inclusiveeducation.ca, we hear from parents and principals who are making the concept of inclusion a daily practice. This website “features interviews with educational leaders who share their ideas about what it takes to make inclusion work. These interviews are interesting for themselves – but when you look at them all they provide a valuable source of ideas from many school leaders.”

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By 2012, accommodating disabled persons in Ontario will become mandatory for all non profit organizations. Accommodating people with disabilities will be enforced, and this will make it necessary for all not for profit agencies — which includes hospitals, schools, religious organizations, transportation services and the like — to be able to utilize and/or make available Assistive Devices for non verbal individuals as well as other equipment, environmental provisions and the deliverance of the “products and services” (which entails what we commonly refer to as  accommodation) for a diverse population of individuals with various needs.

Under the Ontarian Accessibiltiy Act which became law in 2005, non profits will all have to comply by 2012 and other businesses by 2025. The use of such terms as “customer service,” positions the act to read that it requires to view our disabled population also as clients and consumers — the latter term which, in our current economic belief and behaviour, renders Ontario’s disabled as more “valuable” citizens.  It is true that the disabled are important part of our society and contributors to our economy, and it makes sad but true sense that our legislators have to enforce the accommodation of all our citizens by using these terms. Economic terms. We deliver a basic human right via “customer service.”

Now that it is soon to become mandatory for an area that I’m particularly interested in — schools — I wonder why there is continued resistance in Ontario to use AAC (Assistive Augmentative Communication).  Adam needs the computer in his school to communicate his understanding of the concepts being taught. It seems like simple ABC to me. In this day and age where technology is common and relatively inexpensive, and where autistic children can indeed excel, it makes little sense that we have to make enforceable the ways and means that autistic children can participate and be included in the classroom and with their peers. This argument goes beyond devices and right down to understanding how autistic children can learn and respond and how the format of the lessons and teaching styles need to be delivered. For if our children are now viewed as valuable “clients,” then one would think they should certainly be entitled to no less.

I for one am working with the act and terminology to encourage service providers unfamiliar with accommodating disabled people in Ontario to adapt and include. Once we can help others to understand that disabled children do not “pull their other children down,” but in fact propel them forward both as compassionate human beings as well as academically, we can create more just classrooms. “Research shows that for typical students in inclusive classrooms, academic performance was equal to or better than that of general education students educated in noninclusive classrooms.” (Exceptional Children, 64: (1998) 239-253) “And, contrary to the worries of many parents of typical students, the inclusion of students with severe disabilities (when there was appropriate support) did not reduce teaching time nor create many interruptions.” (Exceptional Children, 61,3 (1994): 242-253).

Yet the burden of proof will remain heavy upon us for some time. There is not really a day that we do not confront resistance to inclusion (or “barriers” which is a commonly used term), in the name of safety, medical needs, the guise of inclusion under the term “mainstreaming,” competition and more myths about why special needs children should not be included in our communities, schools and daily life. It is up to us to hold steady with this burden  to keep up the research and the dialogue about why inclusion is good for everyone.

As Adam goes to an inclusive school, it seems logical that we learn to teach by teaching and we learn to include by including. Legislation or no legislation, we will still have a lot of work to do in order to help others understand autism and autistic people as valuable and entitled in their own rite.

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It is no secret that divorce is overwhelming. Add to that being ill, moving, or receiving that “autism diagnosis” about five years ago has made my recent life path rather bumpy — a list of to-do’s and goals and I’m getting tired. If living our lives “authentically” (a popular word used so much today) is a goal, I might suggest that the way we live is anything but.

As a mother of a special needs child, there is more work as our children depend on us for longer periods of time. I’ve devoted my life to Adam, and maybe even garnered some of my identity from that. Yet, how can parents, especially those of us who strive to seek acceptance and advancement for our children in society create a balance? How can I still give to Adam all that I can, be the good parent, AND take care of my own needs, AND contribute to the world?

I may have found part of the answer in the bigger picture. The self-help books are okay, but they all seem a little saccharine. Sure, there are some good tid-bits of advice here and there — perhaps we all need to read them when we are in moments when the waters are just too deep.

As friendships dissolve (a natural consequence in divorce is losing “couples friends”), and I think I’ve gone as lonely as I can go, the insights and work of others have held me up.  It keeps me steady. It enables me to think about the future that is greater than my own issues, but also not whole without them, and that beckons me to become more a part of it.

As any parent — special needs or not — we are all familiar with the daily to-do lists and tasks that keep us running but make us feel empty. What have we achieved? Do we do our daily tasks with a level of intention that keeps us engaged in life and with others or are we just racing through? What is the goal for Adam and I, if not for all of us? That is the challenge we all face and I believe the answer is in slowing down and doing things with greater deliberation.

Also,  part of the answer lies in the communities we build — not from raping the land and a town with money-making developments, but in perhaps growing a little less and creating environments where humanity thrives.  Were we to have beautiful towns, places to walk to get our groceries from local farmers, events nearby we didn’t have to drive to, and neighbourhoods of children gathering to play again, rather than establishing “play-dates” weeks in advance, I believe we would all be less lonely and we would fulfill many goals we have as an autistic community.  Isn’t this what we want for our autistic children most of all? To be included, happy and less lonely? To be contributing members in our communities? How can we create this if we barely get to know our neighbours?

We all have that nagging feeling, don’t we, that we are all less connected to each other than we want to be? Fine, we in the autism community have connected globally via the Internet, but where do we go in our own towns?  Facebook, among other sites, tries in allowing people to advertise events. But what of just going out… unplanned? How many calls do I receive of parents with autistic children (now adults) who are desperately trying to find a group to belong to? And what must I do? I have to think of all the organizations that have formally created groups with specific meeting times that individuals must drive to. By the time we get this far, it already sounds like too much effort.

As I look at the work of Edward Burtynsky in Manufactured Landscapes, I was taken aback by the scale of growth and efficiency at the cost of humanity. His photographs of urban and industrial landscapes, he seeks not to judge our economic growth and efficiency, for he captures a sublime and repetitive beauty in that which we would otherwise call ugly, but he tries to raise our consciousness in how we are living — tenuously and on the brink. It’s as if he is saying, “okay, we’ve reached this point and now we have to change,” not as punitive, but as an empowering statement. We have created manufactured landscapes of such scope and scale that surpasses the building of the pyramids. For that we must recognize what we are capable of!!  Now, he asks through his work, where or what is the humanity of our economy?

In The Geography of Bliss and Deep Economy, both authors use the study to point out that “growth is no longer making us happy…Though our economy has been growing, most of us have relatively little to show for it.” (Deep Economy, p. 11). If every action in our economy burns fossil fuel, it also burns human energy. And the costs are apparent in the desolate backgrounds of Chinese culture, and the faces of a tired Chinese people — the fastest growing population and nation in the world.

So you might ask: What does economics have to do with raising children and marriage?

Absolutely everything.

“In 1946, the United States was the happiest country among four advanced economies; thirty years later, it was eighth among eleven advanced countries; a decade after that it ranked tenth among twenty-three nations, many of them from the third world. There have been steady decreases in the percentage of Americans who say that their marriages are happy, that they are satisfied with their jobs, that they find a great deal of pleasure in the way they live.” (Deep Economy, p. 35)

As I digest my life up to this point, and the general dissatisfaction of our society, I must consider how connected all of this is, like Indra’s Web. Divorce may be overwhelming, as are all the current problems in our world, but perhaps the answer in building a greater sense of satisfaction in our lives by creating more simplicity — shedding the complexity and just being honest with ourselves that we can no longer do things the same way as we used to. It involves, as in divorce, letting go.

It is no surprise to me that there is a strong resurgence of farmer’s markets — there is one I discovered in a nearby artist colony that I now take Adam to on Saturday mornings and it has become a real gathering place.Adam and I like to go out, ride the bike, pick up groceries on foot as much as we can, and we can be more aware of the energy we burn. The more attention and care we bring into our lives at every level, our quality of life improves. So this not only stands for the average family or person, but also for the special needs family, for what we need most is connection with others.

I think about the Supermom I was called to become when I was a young girl (I went to a Catholic all-girls school which further pressed me):  “You can bring home the bacon; fry it up in a pan; and never, never, never let him forget he’s a man.” That commercial tune rings in my head and makes me want to go back to bed!!  It’s not about pleasing everybody. We cannot, lest we displease ourselves. It’s about how we live and do we go to bed every night knowing that we lived our day well, without the frazzle and anxiety of what we must produce tomorrow. For perhaps to live life simply is not to do too much, but to do a few things well, including putting the intention back into the simple things we must do.

I have come to think that being proficient at one or just a couple of things is better than being the most efficient mother — the autism mom who advocates, “fights,” for her child’s rights, organizes events, sits on boards, writes articles, and barely has time enough to cook a good meal. It’s not that I’m going to necessarily stop all of these things, but I can’t do it all at the same time. The time has come to shed and to rebuild, to de-commit and commit, and to teach my son how to live a life well. I am sad to say that divorce has made me view life this way. But this is what happens when life hits you over the head. I may have still come to the exact same conclusions if I were still married, but I believe a marriage is a reflection of all the systems we build. And it too needs the commitment of simplicity.

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When I look at this video and of course, the recent CBC Documentary Positively Autistic (click on it on the right side bar of this blog for the actual video or go to http://www.cbc.ca/national/blog/special_feature/positively_autistic/).

I am very proud of those of us who step out and take the risks we need to take in order that we achieve a better and fair education for our children and an equal treatment from others. We work hard to try and convey the message that we need better understanding and better services across the board. And we do it all the while being called “crazy” and “unreasonable,” or we are the parents who love our “little babies now,” but we just “better wait until they grow older!” attacks. I suppose any movement that seeks to positively change things while risking out-of-the-box thinking, will result in opponents. It’s easier to stay with the status quo.

Coming from the place of diversity and Inclusion for all will advance all of that. I watched this video again, and felt it needed to be repeated.

Of course, most of us didn’t find Sawyer’s insistence that we must all be heartbroken (or continue to be) that accurate. But then again, joy, sadness, struggle — aren’t these the things that life is made of? Do we not create our own happiness? As I mentioned in the post The Metamorphosis, happiness, for me, is watching Adam grow and develop, and other unseen if not brief moments that we usually do not recognize for they come fleetingly. We just have to tune in to them.

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