Estée KlarTo Get To The Other Side

I love this video. It’s just that simple. “You get rid of the autism gene and you get rid of Mozart, Einstein, Silicon Valley…” I love how Temple advocates and it’s this kind of advocacy that assists us in putting ourselves, as neurotypical parents and teachers and therapists, with outrageous expectations, under a much needed spotlight. Beyond listening to her story about “gifts” is an opportunity to consider the disconnect we create when we try to “fix the problem.”

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

This study sent a little shiver through my body. Remember the story of the big bad “Refrigerater Mother?” She was the mother who was blamed for causing autism in her child in the 1960’s. Many mothers during that period were tormented for being pushed to believe they were the cause of their child’s autism. I wonder if the legend survives. From a peripheral read of the following study, this mom had a maternal “first response:”

A new study by researchers from the University of Miami shows that maternal sensitivity may influence language development among children who go on to develop autism. Although parenting styles are not considered as a cause for autism, this report examines how early parenting can promote resiliency in this population. The study entitled, “A Pilot Study of Maternal Sensitivity in the Context of Emergent Autism,” is published online this month and will appear in an upcoming issue of the Journal of Autism and Developmental Disorders.

I am not commenting on how the study was conducted nor the value of “resiliency.” I am commenting on the inference. I am a sensitive mother. Some say I’m pretty good at mothering. I’m extremely sensitive to my son, and he is non verbal. He can manage a word or phrase now and again, but at nearly eight years of age, it’s pretty difficult. I engaged Adam. I did everything (and still do everything) I can think of. He is a wonderful child who is anxious and has some sleep issues. I’m not sure I could have been even more sensitive than I was to make him more resilient. While he’s pretty good at moving around the community, going to school (with an aide), traveling, he does have extremely difficult days too and we are going through some of them RIGHT NOW during a major transition in our lives. Because of Adam I continue to grow and learn how to work with him, and there is always something new for me to learn.

With this study, I fail to see an acknowledgment (in the links I could find tonight, I have to qualify this) that for many autistic individuals the inability to speak fluently, or at all, is neurological, not just dependent on the sensitive mother. The term “re-wiring” is used a lot for individuals with brain injury and just as often by gurus selling therapies for curing autism. I will never argue that, as parents, we all want to try and help our children in a world that is often confusing and frustrating for them. Yet, I also wonder if teaching autistic children how to communicate is something very different than re-wiring, for that implies that we are fixing something to make it better. Adam communicates all the time. Like the two-year-old who may have warbled speech indecipherable to many but the parent, some of us close to Adam know what he is communicating — and quite boldly. Perhaps we might consider that working with autistic children is like figuring out the intricate wiring that already exists. Like the ill-suited American plug to the European outlet, maybe we aren’t meant to re-wire the autistic brain into a neurotypical one.

“In this study, maternal sensitivity (and primarily, sensitive structuring) was more predictive of language growth among toddlers developing autism than among children who did not go on to an autism diagnosis. One possible explanation is that children with autism may be more dependent on their environment to learn certain skills that seem to come more naturally to other children.”

I would agree that our children need our support, and this does take extra effort on our part.

“Parenting may matter even more for children with developmental problems such as autism because certain things that tend to develop easily in children with typical neurological development, like social communication, don’t come as naturally for kids with autism, so these skills need to be taught,” says Jason K. Baker, a postdoctoral fellow at the Waisman Center, University of Wisconsin-Madison, who conducted the study with Messinger while at UM.”

I don’t disagree with the idea that autistic children require more support and accommodation in a confusing environment, and that “being sensitive” is especially important. Many of this know this. I tend to see this as part of the autism and NT (neurotypical) equation, for the key is that we as parents learn how our children learn and how they see the world. I don’t see it as a tugging into “our world,” but a sharing. It’s the manner in which we, as parents, figure out how to be with the child who is already with us, with challenges in a world that has such difficulty understanding autism, but also with many strengths and attributes. Acceptance is a daily exercise and the idea will challenge us day in and day out — some days (and nights) more than others. Every day Adam works so hard to accept me, to accept this world and the people around him, and I wonder if that’s all we seem to ask him to do. The least we can do is to accommodate him and what he needs and wants from this world.

This article ends with a shallow disclaimer: “We know that parenting doesn’t cause autism. The message here is that parents can make a difference in helping their children fight against autism.” Okay, it doesn’t cause autism, but the implication is that the sensitive mother can improve language acquisition and resiliency skills. The results may have been one hundred percent true according to the study design, but the key piece of accepting autism is missing.

While it is certainly advantageous to have a sensitive parent to ANY child, I would hate to think that one might judge me as being an insensitive one if my son is not able to speak. Further, the focus on mothers specifically has reminded me of times I thought had long gone by. Maybe the Refrigerator Mother still lurks in the dark recesses of some minds. To conclude from my peripheral read and no reading of scientific critique on how the study was conducted, I sniff not only an omission or two, but a little bias.

Tilikum is the “killer” whale confined at Seaworld with an apparently demanding entertainment schedule. Listening to Naomi Rose, head of the American Humane Society and a mammal scientist on CBC News at Noon today, she noted that Tilikum is not meant to “be a clown,” and that this puts a great deal of stress on the animal, explaining reasons for its aggressive behaviour. She spoke about Orca Whales as “individuals,” and discussed them and their families, as well as their social networks, and that when in their natural environment, do not attack humans.

In the media, the debate rages as to whether the whale should be put down, kept at Seaworld to remain an entertainer, or be sent to a Sea Tank in Iceland — a choice which Rose recommends. Transcribing her statements on CBC today, she noted that Tilikum has a history of this behaviour and should not be kept under the same conditions. In other words, get the message!

“He could be trained to adjust to going out into the open ocean to exercise and get more choices and then maybe his stress would be reduced,” she said, suggesting Tilikum may have simply been trying to play with his trainer.

“If they keep him in isolation the way they do, they keep him in that small tank that he’s in, this is going to happen again.”

There sure is a lot of attention for this beautiful creature. All the talk about how the animal is under stress and how that animal communicates that stress naturally got me thinking about Adam, autism and methods of communication and how many of us do the same things over and over again to no avail. Working against nature doesn’t work for very long. It has real consequences.

We are calmer on the home-front again and Adam seems to have found his place here in the house that has been understandably strange. I expect that while he is calm now, we will have a few more bouts of stress. Like Tilikum, we cannot demand that he perform like nothing has happened to him, or not react to this kind of change. Adam will communicate his true nature and it is up to me to listen.

Now if autism advocates would advocate for autism they way Naomi Rose does for Tilikum…

In keeping with the theme of this story is a post by Clay I would urge readers to visit: “Violated for Having Autism.” 

We are confronted with new challenges in our new home. Adam seemed to transition well at first, but now it is difficult again. As mentioned in the previous post, we do not know if Adam’s spasms are seizures or are spurned by tumultuous transition. On my end, all I want to do is get back on track with Adam. I for certain want my sleep as I function horribly without it. I want him to get over the hump as smoothly as possible until he can have his tests and/or become comfortable in his new home and situation.

But there’s another problem.

It could be me.

I need to re-learn my ABC’s. Remember those: Antecedent, Behaviour, Consequence? We put an autistic child under our neurotypical microscope (as if that doesn’t cause distress), and evaluate the antecedent (or cause) of a behaviour so that we can seek to change (or eliminate) it. The Consequence in behavioural-speak is what happens after the behaviour. I’m not saying that these tools are not useful to us. They can be if we learn how to assist autistic children cope. I’m not a fan of eliminating behaviour. But there’s another side to this story.

When I worry I am studying Adam. I watch for every little sign. Then I realize that I’m not watching myself. How am I feeling? How has my anxiety triggered a course of events? Adam just wants to explore, and yes, he cannot sleep like most autistic people who, as they become adults, learn to cope on very little. In his new home, Adam is very “disorganized” in his body (for those unfamiliar with this language, it means that Adam is moving his body in unfamiliar ways or hyperactive ways and it can appear distressing), and I still do not know for sure if it’s medical.

Yet, I also am thinking he is learning about every nook and cranny of the house as he used to memorize routes on road trips from school to home or from his old house to the park. While he didn’t get upset if we changed the route, he certainly memorized it. I’m thinking of Dawn Prince Hughes, author (and new friend of mine since I met her in Toronto a couple of years ago — little did she know that I was a HUGE fan of her book beforehand) of Songs of A Gorilla Nation: My Journey Through Autism and the excerpt on herself as a child running around in the same circle in her house. Experiencing this first hand, it’s exhausting for a parent who wants their child to “behave” or settle. Then I have to think again.

“The way I said ’siiiilllverrr doooollllaaarrr’ was only the start of a profound pattern I had throughout childhood saying words and phrases in peculiar, experimental ways and having a complete fascination for words. When I was young, my parents and I often stayed at my mother’s new house, and my favorite uncle lived there also. A hallway ran around the perimeter of the house, past the dining room, the bedrooms, the bathroom, the front door, and through the living room back to the dining room, in a big circle. My favorite game (to the exclusion of all others) was to wait in the dining room for the adults to come up with a word — the more difficult the better — and then I would speed off down the hallway, in the same direction every time, either on my tricycle or on foot, repeating the word over and over.” (pp. 17-18).

Hughes describes then running to each of the rooms saying the word “where the word would absorb the comfort of my grandparent’s bed, their clothing, the beauty of the vanity table, and the smell of cedar drawers…” (p. 18)

Not only have I found Adam enclosed in drawers, but under the bed, and in the deep dark crawl space in our new basement. It takes a lot of effort for me to stay awake and keep an eye on him, as his safety always comes first. His body jerks, he lays on his back and holds his legs. He opens every cupboard, closet and drawer and is still absorbing them — and maybe he can do this better when he can enter them.  Save for the things that he knows — books, his computer that still has the same “Alligator King” from Sesame Street on it, and a cupboard full of crackers and goodies he now knows is his own, he is still disorganized here but is working so hard himself on trying to get organized and calm. Indeed, my boy is making gargantuan efforts.

To this Hughes writes, “I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes…When I went shopping for clothes with my mother [Hughes describes being afraid of mannequins]…My strategy for survival was to hide inside the clothing racks…the lack of light would calm me down. Hiding was yet another thing that later connected me to my gorilla family — when they went behind the hills to sit or seek out the little caves in the underbrush or rock to be by themselves, I would understand.” (p.21). Similarly, Adam has gone to the books that were the same from his old house. He is not interested yet in new things.

Adam’s grandparents have been around a lot to support him. I believe his grandparents are two of his favorite people (and most consistent). Again this relates so closely to Hughes: “When I was young I stayed with my grandparents on the weekends, and those were among my favorite times. I did feel safe there.” (pp. 21-22). Ask my parents and they’ll likely say that their condo is his “turf.” They have been helpful to Adam and I during this time.

Adam craves lemons during this year of transition. To this, Hughes writes, “I craved salt and would eat it straight from the shaker. I craved burnt matchheads and would suck on them whenever I could find them. I craved Alka Seltzer for its taste and feel….A sound like the thrum of a tumbler full of milkshake when is was tapped [Adam does this all the time] by a spoon or the Westminster chime of the clock would fill me with rapture.”

So I give Adam his lemons. Right now, I’ll buy him a bucketfull, although other people will tell him to “stop eating lemons,” or, “stop doing that.” Sure, I worry about his teeth, or of Adam’s safety in potentially dangerous situations. I’m not saying that we have to allow our kids to do everything, but I have to let him do more than usual and I have to change my behaviour to accommodate it right now, for this is an exceptional situation. I’m always trying to stay one step ahead of Adam to figure out how he can explore safely.

“Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one’s body without ever being processed: the filters that other people have simply aren’t there. Swimming through the din of the fractured and the unexpected, one feels as if one were drowning in an ocean without predictability, without markers, without a shore. It is like being blinded in the brightness of a keener sight. Autistic people will instinctively reach for order and symmetry; they arrange the spoons on the table, they line up matchsticks, or they rock back and forth, cutting a deluge of stimulation into smaller bits with repetition of their bodies’ movements.” (p. 25).

This is quite an overwhelming statement for me on how Adam may be experiencing his new life situation. It is quite a disability and a sensory overload.

My point is, Adam is adapting as naturally as he can in a home that is entirely new to him. He will thrust his body upside down, will spin, will seek those dark tight spaces and not be able to sleep in his new bed precisely because he has not yet created his order. But he is doing what he needs to do. I, on the other hand, despite knowing this, am having difficulties of my own in managing it. Watching my son in distress distresses me. While this may be natural for Adam, it was re-reading some of Dawn’s excerpts this morning that helped me realize what I’ve learned in the past, but am now experiencing first-hand in a larger way.

I realize that I too am adjusting to my new surroundings as I listen to the house and figure out how I’m supposed to live in it. Things break down and I get frustrated because I am not yet calm and oriented, and this is difficult on both Adam and I.  While I feel guilty much of the time that my own anxiety is not helping Adam, I know too that we are not in control of everything that happens to us. Life happens. We are dealing with it. Like Adam, I am human.

So I was thinking about going back to the ABC’s and I thought of using it as a pun on behavioural-speak because what most of us want to try and do is “fix” the situation or behaviour. Today, I am reminding myself that this needs exploration and time — we’ve only been in our new house for a week! Not only does the alphabet, which Adam loves, stay constant in a world that is always changing, but re-reading Dawn’s book has helped me realize what tumultuous change feels like to an autistic child. It may require more effort on my part now to help him adapt by creating safe ways for him to do so. Adam will reach for his ABC books that always stay the same and he’s doing his part, and I am having this feeling he will eventually make lemonade out of lemons.

We’ve had some encouraging messages lately, haven’t we? The HBO production of Temple Grandin played by Claire Danes shows that while (and many of us have read Temple’s books already) the world caused her anxiety, she could “see details other people are blind to,” she says. “I have a gift.”

Certainly the idea of giftedness, which happens in non autistic and autistic persons, can be yet another stereotype in assessing autistic people. Perception, on the other hand, is something to think about deeply.

When Adam was very young, we had these water blocks that were dyed different colours. Adam was mesmerized by these blocks watching the water swish and swoosh. Then all of a sudden, my wobbly toddler took them up to the window and peered through them. Ah, I thought. If only we could all stare at the world through coloured water blocks. How beautiful it would be. I know was also in part a cooing mother of a young autistic boy, so anything he did like this made me hyper-aware. But still.

When he got his “legs” and we began walking around the neighbourhood, Adam memorized his routes. To this day, if we take him to his old house and walk from there or the park nearby, he will remember how to get to that park or get back through the old “secret pathway” to the old house — which has even since been torn down and rebuilt! Remember, that was his two-three year old brain. In April, he will be eight-years-old.

Coming out soon will be a new version of Lewis Carroll’s Alice in Wonderland, directed by Tim Burton. Many people suspect that Carrol was himself autistic with his different perceptual abilities. He is often cited as a person who “suffered” from micropsia and macropsia, which is a neurological condition that changes the way the brain perceives the size of objects. When Alice falls down that rabbit hole, we get a look into Carroll’s mind.

Scientific American Mind published Extraordinary Perception by Wray Herbert this month. It discusses how psychologists at University College London “think that it might be a mistake to consider [autistic] distractability as simply a deficit. To the contrary, Anna Remington and John Swettenham and their colleagues speculate that people with ASD might have greater than normal capacity for perception, so that what appears as irrelevant distraction is really a cognitive bonus.” I added autistic to distractability as many therapies for autism as well as medications are geared at lessening it.

The test, the article shows, was for subjects to “rapidly determine if the letters N or X were present in the ring” on a computer screen. Participants had to then “hit the corresponding key on the keyboard. Some of the circles — those with more letters — were more difficult to process than others. There were also other letters floating outside the circle, but the subjects were specifically instructed to ignore those letters. Those floating letters were the laboratory equivalent of an irrelevant distraction in the real world.” In measuring perceptual capacity, researchers saw that “everyone was slower at the task when the ring contained more letters. The researchers were also measuring distractibility. When a letter outside the ring was one of the target letters (N or X), the subjects often took a longer time finding the N or X in the ring — indicating they were distracted by the presence of a target letter in the location that they were supposed to ignore.”

The researchers reasoned “that as long as the subjects’ total perceptual capacity was not exhausted, they would also process the irrelevant, distracting letters within their visual field. Once they had surpassed their perceptual capacity — once the ring of letters was sufficiently complex — irrelevant processing would stop [bold mine]. So if ASD subjects in fact have greater processing capacity, then they should process more distracting information even as the main task becomes increasingly complex.”

In conclusion, “although there was no difference among subjects in either reaction time or accuracy on the main task, those with ASD processed the irrelevant letters while solving much more complex problems...Put another way, they weren’t ignoring the main task, nor were they distracted away from it. Instead they were completing their work and moving on, using their untapped capacity” [bold mine].

This article also concludes that while this is a benefit, it also does have “real-life consequences.” They begin and end the article citing Tim Page, an author with Aspergers from his book, Parallel Play: Growing Up With Undiagnosed Asperger’s. Page recounts his time in school who failed an essay about his field trip which was quite detailed in terms of his way of perceiving it, and how he was scolded for writing in that particular way. “I had noticed the wrong things,” he writes.

As a parent of an autistic child who has difficulties with verbal communication, I have to ask the question: “whose problem is this anyway?” Certainly I have been dealing with issues, at least issues for me as Adam cannot comment here yet, so I am fully aware that I need to be fair. He has very real sensory and perceptual differences, so I set up a basement full of equipment for him to self-soothe. He has even learned to “self-regulate” by going to read his own books, and I never had to teach him that. His body will completely quiet as he flips through pages of encyclopedias, dictionaries, cookbooks, among many other subjects. He may even appear to layperson as not really paying attention and just flipping pages, but I know it’s more than that. His body-jerking almost always stops, which is how I conclude that he is soothed by his books. I am imagining him looking at those books over and over again, and what he may be gleaning from them. Still, when it comes to getting the responses WE need, he using a “special” reading program at school. Indeed it is really helping with his expressive reading ability, and maybe even with his vocabulary. So I need to let him do both. He needs to learn to respond in a world that doesn’t yet understand the way he learns. He also needs to flip through pages and pages on his own. I can sit beside him sometimes also and talk about the books he is reading. We can type about what he is reading, we can draw stories and make more conclusions or assumptions about what he is reading. When we do things together calmly, we are having lots of fun.

When we teach him a new communication device, it may appear to the person who is teaching that Adam is not focused enough — indeed he appears to be “highly distracted.” On an AAC device (we are still awaiting one from a service-provider here in Toronto) his finger will go to the right picture, letter, or answer, and then he will quickly go to another one to check out what it will do. A keyguard helps him direct his finger more quickly to the correct response. He may have trouble finishing sentences (when he types) and then be reminded to “stay on task.” This is in large part what Facilitated Communication attempts to assist with if done correctly — to remind and assist with the focus. To a person who cannot detect that Adam was about to give the “right” answer (or rather the answer that was requested of him), he would receive a failing grade. Adam is very young and I believe he is not given the benefit of the doubt enough, although his team members are good with this.

It is only fair to say that we do not KNOW everything he knows. We do not fully understand how he takes all this knowledge in and we are the ones that deem his versions of knowledge as irrelevant. We have not developed sufficient ways to measure his responses or his way of learning and seeing, except for the ways we measure responses and knowledge from people who are not autistic. This brings me back to the old ABA adage, “if we can measure it, we can deal with it.” Unfortunately, the way we have historically dealt with autism is by eliminating the behaviours and learning patterns that are essential to an autistic person’s existence. Perhaps continuing to fund this research more heavily is important because as we understand how autistic people learn, we can not only develop better learning tools, but come to better appreciate our children.

Trying to understand this is a first step. As Adam’s parent, I see many of the so-called “issues” being mine, and yes, I become just as frustrated as many other parents out there. It’s really hard to see Adam in distress and it’s even harder to always be guessing what may be causing anxiety or body-jerking (Lack of calcium? Trouble at school? New self-awareness of difference? Trouble with transitioning from task to task? Lack of sleep? Seizures? A very long winter? Lack of exercise? Another neurological issue?…The guess work list is too long). Since Adam appears to be in discomfort since late last fall, I am really working hard at figuring this out (wait-lists are long here in Toronto). Sleep issues, anxiety issues — I know when I have a level head, there is more that I can do for him to ease the situation. We need science now to figure out many of our questions.

Sometimes it feels that makeshift solutions only lead to more issues. Sure, we all want things to be a little easier, but Adam requires more consideration in order to achieve that balance between helping him through discomfort as well as accommodating his needs. As I have been through a difficult year, like many of you out there, I completely understand the reasoning, but I have to keep a level head and look at what Adam has also gone through with a “broken” family. I have needed my sleep, but if Adam cannot, I have to find safe ways of letting him stay up until his body will sleep naturally. I know what I’m saying isn’t easy and there are still days I will resort to the Melatonin, even though, because of the guesswork involved, it pains me to do so. Yet I also know it’s important to stop and slow down and think about how Adam feels and perceives. When I do, everything seems a little easier. As a parent, I can even become proud of myself (it’s important) that I’ve not only managed well, but have helped Adam out too. We are still on that path to finding out if we can help Adam, but I am always wondering excessively about how I perceive the “problem.”

I’m interested in what people in science think about this Perception study. I think we have to spend a lot more time imagining what it feels like to be in Wonderland.

——-

Excerpts from:

“Extraordinary Perception” by Wray Herbert in March/April 2010 issue of Scientific American Mind, pp. 68-69.

Further Reading:

Selective Attention and Perceptual Load in Autism Spectrum Disorder, Anna Remington, John Swettenham, Ruth Campbell and Mike Coleman in Psychological Science (in press). Published online October 14, 2009. www3.interscience.wiley.com

This post will be brief as I am living in the moment of moving homes. Adam came to our new home today before he goes on a mid-winter break with his dad. His body-jerks have returned and he cries in his new room. “Are you scared,” I ask.

“Are you scared?” he echoes back with then a slight delay. “Scared,” he says forcefully.

We have made numerous visits to the home, but because Adam can understand what he cannot express fluidly with words, he is reacting. It is strange. He knows the move is now imminent. He is experiencing the stress that other children experience. He has experienced so much.

It brings me back to the time when I was six years old and my parents moved homes. I remember when they looked at it, when they purchased it — my dad and I put the “sold” sign on the front yard. So new was the house, the lawn was not yet in and we perched the sign in the dirt. Dad made a big deal out of it, I remember that much. He was proud. It’s amazing what impressions we retain from out childhoods. It wasn’t much longer after that — I returned from a weekend with my grandparents to sleep (all of a sudden) in my new home. I believe there was even a stuffed animal waiting for me in a newly erected brass mailbox by the front door. It was summer. The “welcome committee” was ready to do its job and make me feel right at home. That committee was my parents.

I remember that arrival and how strange it was, but I’ve lost the memory of sleeping there my first night. I’m certain my extremely attentive and loving mother did everything she could to make me feel I was at home. Yet, it didn’t feel quite right. I couldn’t ride my bike around the house in my old neighbourhood where a garden was planted and grass was laid and my good pals were gone (I was particularly close to the boys I punched in the stomach — it wasn’t my idea… it was my father’s. He tried to make me into a tough girl and STILL relays that story proudly to anyone who will listen…kind of embarrassing at my age). Nope, they were all gone and all I had was the bike and the dirt for my early introduction. The plumbing still wasn’t working in the block so new, that we had to use the model home down the street to take a pee. Indeed, that was a strange feeling.

My parents are still around and are extremely loving grandparents to my son, not to mention incredibly supportive of their daughter who is now not only a single mother, but also their only-child having another life “adjustment.” Let’s just say that they mean the world to me and I’m certain to Adam. On Monday, when Adam returns home from his break with his dad, those same grandparents will be the welcoming committee to his new home that he will settle into with mom.

Adam is only a year or so older than I was when I made the major move. I try to appreciate how strange this all feels on top of parents who are no longer together. I think of how confusing that must be; how stressful sometimes, and because Adam is autistic, he manifests that stress in physical behaviour. It is the only outlet he has. Even though we are all doing our best to help him along, Adam has been expressing how he feels about the matter.

Expressing boldly without words.

I now play a video I made with Adam’s grand-dad a few years ago. I love the little guy more than words can say. This is a look backwards with gratitude while also hoping the future will bring us both peace.

It’s the final countdown. Adam and I will move in several days. I’ve written a lot about it. Tomorrow Adam sees the neurologist. Last Saturday Temple Grandin’s story was aired on HBO. It all reminds me of Adam’s anxiety and how I found him two nights ago in his underwear drawer (closed) in a fetal position at 5:30 in the morning. The change is very big for such a little guy.

It manifests in his senses. I think his body jerks and desire to be in tight dark places have a lot to do with change and his parent’s separation. I certainly believe my little boy is telling me how he feels without words.

I really believe it. It’s why it makes me a bit frustrated that people think that autistic behaviour is “abnormal.” What’s the difference between a neurotypuical child who tantrums versus an autistic child who can’t tell me that he’s confused but seeks a drawer to find security?

Without words, Adam speaks volumes.

All I can say is that I look forward to putting some security/regularity back into Adam’s life (and mine). By next week I shall be posting from our new home.

Please wish us luck.

Of course I heard this song on the radio today transporting stuff from one house to another in my car:

Curiousity is a wonderful human trait. Adam is autistic and while he needs some regularity and structure and familiar environments, he also needs to explore new ones. He is curious. He likes to explore — in his own time — new foods, new things, new places. I pride myself on having traveled with Adam even when it wasn’t easy to travel with him. I do it with him as a single parent now, and his dad and I did it together when we were married. While I was tentative in Adam’s early years of flying him as far as Africa, I do not rule it out as he grows older. Just because Adam is autistic does not mean that he should not see the world. It’s how we orchestrate the process and itinerary that’s important. As a parent, I know I also have to be prepared for anything. Too many expectations can foil the best of plans.

We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

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….

Rethinkingautism.com is a site that has taken The Autism Acceptance Project goals to a new level. “One video at a time,” they seek to use the same tools that media use in shifting and reframing the dialogue about autism:

When I wrote The Joy of Autism blog, I wrote a mantra with one line that said “because joy doesn’t come without struggle.” I don’t know if it’s part of the way I think about things, something about me, but my friends certainly share the struggle part. I am lucky to be able support some friends in some difficult times right now as my friends are supporting me. I have to think long and hard these days about joy and struggle and still, I am so convinced that if people understood autism a little more, we would not have necessarily had insult added to injury in the emergency ward.

Adam and I returned from the hospital yesterday after observation Friday night. We did not go to our usual hospital, and the benefits of not going to it may have been some extra attention in the end. But attending emergency was a bit of a nightmare as everyone who registered after us, got admitted before us, even though they didn’t look that ill at all (and consequently they all got discharged while we were still sitting in emerg). After having asked the triage nurse “how much longer, can’t you see he’s in pain writhing over there,” in a relative calm voice, she told me not to yell at her (are they trained in saying that even though someone is not yelling?). I had to do my part in managing her the way she was, I suppose, trained in managing me. It took some, let’s just say, urging after that to get Adam in (she had been lying about the crowds in the hallways inside because once we got in, it was relatively empty) or else we would have likely spent another three hours just sitting there without any help or attention. There was absolutely no visibly known/obvious reason for this after we were admitted.

Many families can imagine a child screaming so much til they are red in the face. In addition to whatever is happening with Adam, going to the hospital and waiting is one of his number one stressors. “Can he at least have a sedative?” I asked after waiting six hours like this, Adam’s face apple red, his lips quivering, his whole body shaking and contorting into a letter C. Nothing.

Thankfully, from my trip to Paris, my bag was full of goodies. I found melatonin strips buried deep at the bottom and after six hours of waiting for any kind of help, gave him a strip. By the time Adam’s dad and grandfather arrived, the edge was gone and Adam was lying on top of me on a gurney.

The doctor was prudent enough to want to observe Adam overnight and I got to sleep with him in the pediatric ward. Later arrived his bag from home with DVD’s, some food, his P.J’s so I could try an emulate the comforts of home. Bloodwork was then taken with little trouble due to the melatonin and the hours of previous crying which had completely exhausted Adam.

My mother went to the nurses station. “You are the talk of the station,” she said. “They didn’t know melatonin worked for autistic kids.”

YIKES, I thought. Melatonin may not work for all autistic kids. In fact, some families have told me melatonin stops working. While I am grateful for the female doctor (not from Canada), for her soft bedside manner and her prudence with regards to his body jerks and spasms, I am still very concerned that hospitals do not understand the needs of autistic people and the stress levels that going to hospitals can create. I mean, as Adam was screaming, one staff in emerg said “Oh you mean he isn’t always like this?”

And readers of this blog and my Facebook will know that uh, no, he is not “always like this.” Adam does not always spasm, contort, and melt-down. He has some anxiety but he is a very happy little guy. In addition, what would have happened if I did not have that melatonin on me?  I mean, his heart was beating so fast I was concerned he’d go into cardiac arrest. When they witnessed the calming effect they said, “Can you give him another 3 mg before we give him his bloodwork?” Folks, as “autism parents” we have to advocate for our children, and carry our “bag of goodies,” every day. Some days it seems that there is no one out there to help us when the times get tough. When there is one good person, they shine like the rays of light in an otherwise dark day. It is a universal truth, I believe, that every single one of us finds the “advocacy” part exhausting as our children our lumped into the autism stereotype. And it’s not helping, that stereotype, and this is what I hope to stress here in this post. It just seems to mean that Adam gets ignored because of it. Well, at least in the emergency ward (which needs a complete systemic overhaul in my opinion).

While we await an EEG this week to hopefully rule out epilepsy, I am rudely awakened, despite all exhaustion today, that we still have lots of work to do. There is joy, there is struggle. There is paradox. As my grandfather always told me, “that’s life.”

My friend Leda sent me this piece of music today (see below). It calms me after the “storm.” I think Adam will love it because it is calm. It’s sad and beautiful and just a piece of music for the moment because I am worried and a little “spent.” Yet, even in this struggle, Adam is my joy and my life. He is the joy in our autism and for and because of him, we keep on going despite all with which we must deal.

In the words of Goethe: “Der Zweck des Lebens ist das Leben selbst,” I believe life is not just how “good” we live it (that has been filtered down in our society to mean something quite trite) but in accepting and living with its struggles. Afterall, we just don’t seem to have a choice.

Lorraine came to me by way of my own website, which attests to the power of the Internet in making connections these days. Reviewing her own work with recycling computers, and how she came to regard herself by way of other people’s view of her, I of course cannot help but think about autistic people and what a “contribution to society” can look like:

For people who view obsessions as negative, this video is another story of how our “obsessions” are pathways to creativity and invention. Visit the Next Step Recycling website.