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Book Review: Beyond Rain Man by Anne K. Ross

August 23, 2016 By

beyond rain man

When my son was first diagnosed with autism nine years ago, I went to my local bookstore in search of help. I was looking for books that would tell me how to deal with the sensory eating issues, the grocery store meltdowns, the head banging incidents that left dozens of holes in our drywall. I wanted to know how to get my son to talk, to make friends, to play with toys instead of spending hours staring at a piece of string.

What I didn’t realize at the time was that I didn’t need an instructional manual. I needed to know that I was not alone, that there were people out there who knew what I was going through as the parent of a child with autism, and above all, that my family and I would survive. We would figure out all of those things that I was so desperately looking for, and we would, in time, adjust to our new version of reality.

While I was enduring this phase of post-diagnostic angst, psychologist Anne K. Ross was going through experiences that she would later capture in the pages of a wonderful book. Beyond Rain Man tells the story of a woman who, having devoted her life to helping children with developmental disabilities, was thrown for a loop when her son was diagnosed with Aspergers Syndrome.

With compelling bravery, the author tells the story of her son’s childhood. She describes his struggles, the tears and the triumphs, and the ups and downs of the relationships within her family. As an autism parent, I can relate to so many of the stories Anne tells in her book: the impact of her son’s Aspergers on his younger brother, the challenges of keeping a marriage healthy when there’s so much going on, and the endless concerns about the future.

I do not feel as if I read a book. I feel as if I sat on a couch chatting with the author over a cup of coffee, learning about her experiences and how she and her family got through them.

If time travel was a thing, I would toss a copy of Beyond Rain Man to that earlier version of myself who was desperately searching bookstores for answers. I would make the book magically appear in front of her, and I would tell her that this is the book she needs to make her feel less alone and more hopeful.

Kirsten Doyle was given a copy of “Beyond Rain Man: What One Psychologist Learned Raising A Son On The Autism Spectrum” by Anne K. Ross, in exchange for an honest review.

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Book review, Disability, family, life, parenting Tagged With: , , , , , , , ,
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Book Review: Grace, Under Pressure (Sophie Walker)

October 28, 2013 By

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Being the parent of a child with autism can be a very lonely experience. Discovering that your child has a lifelong disability is a bit like being catapulted from your life into a kind of parallel universe where you don’t know what any of the rules are. You have to navigate the confusing maze of government funding and services, and at times you – and your child – are at the mercy of the whims and moods of the people who make decisions about what supports your child might qualify for.

As you wander helplessly in your parallel universe, not knowing where to turn, you might suddenly feel a hand in yours. Sometimes it will be a hand that gently guides you in the right direction. Sometimes, it will be a hand that reassures you, that lets you know you are not alone, that there are others in this same parallel universe who know what you are going through.

Reading Grace, Under Pressure by Sophie Walker had that effect on me. I started reading the book during a time when life seemed to be conspiring against me, and as I immersed myself in the story, I felt as if the author had taken my hand to keep me company through this journey.

Sophie’s life and mine have some strong parallels. Like me, she is the parent of a child on the autism spectrum, and running has been a salvation for her just like it has for me. Both of us run to raise funds for autism, and both of us live with the challenges of parenting a neurotypical child alongside a child with special needs.

In Grace, Under Pressure, Sophie tells the story of her life with her daughter Grace, who has Asperger’s Syndrome. Through wonderfully crafted narrative, we are taken through Grace’s early childhood, the struggle for answers and support, and Sophie’s evolution as a marathon runner. We get a balanced look at the ups and downs of special needs parenting, and the blood, sweat and tears of distance running. We see the laughter, the tears, the desperation, and the gut-wrenching relief when the light at the end of the tunnel finally comes into view.

This is a book about so many things. It is about a brave, bright little girl finding her way in a world in which she is different. It is about the unwavering dedication of a mother to her child. It is about the perseverance of an athlete striving to reach new heights.

Above all, it is about courage and inspiration, and the idea that no matter what, we should never give up hope.

Sophie WalkerAbout the author: Sophie Walker has been a journalist for over 15 years, reporting on events in such places as London, Iraq and Afghanistan. She lives in London with her husband and two daughters.

For more information about Sophie Walker and Grace, Under Pressure, please visit http://authorsophiewalker.com/home.

Many thanks to New World Library for providing me with a review copy of Grace, Under Pressure. All opinions expressed in this post are my own.

Filed Under: Aspergers Syndrome, autism, Book review, parenting, running, Sophie Walker, Under Pressure Tagged With: , , , , , , , , , ,
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GUEST POST: Back Into The Stride

June 7, 2012 By

In March, I received an email inviting me to participate in the Health Activist Writers Month Challenge hosted by WEGO Health. “In for a penny, in for a pound,” I thought, and signed up. I had never participated in a month-long blogging challenge before and didn’t really know what to expect. I thought that maybe my readership would increase slightly. Perhaps I would come across a couple of blogs that interested me.

I didn’t anticipate becoming immersed in an entirely new (to me) community of bloggers. During the challenge I read many blog posts that were humourous, surprising, heart-wrenching, thought-provoking, informative, or just downright good. I have been fortunate enough to keep in touch with some of the writers, and I remain an active participant in the goings-on at WEGO Health.

One of the writers I “met” during the challenge is a woman who has much in common with me. She is the parent of an individual with special needs. She is also a runner, and therefore totally gets why the highlight of my weekend was going out to buy a new pair of running shoes.

Today, Gretchen Stahlman tells us about her train of thought as she returns to running after a break.

 

I hadn’t run in about a month, the longest stretch since I started running distance six years ago. I normally run three or four times a week, depending on what I’m training for. Last December I started training hard for the half-marathons I ran in the spring. I had a good base from running the NYC marathon in November and I wanted to capitalize on that, plus I wanted to keep myself motivated through the dark, cold winter months. And it worked: I had a PR at my half in March, and I felt like I was really coming into my own in running. But by the end of April when I ran my last half, my body and my mind were too tired to do what I wanted them to do.

Soon enough I’ll start training for the Chicago marathon, so the month of May was a good time to rest and recover and finally address that twangy right hamstring. When I traveled to Denver on business, I purposefully didn’t take my running gear so I’d be forced to take the time off. As it turns out, I liked resting. And I’m pretty good at it (better at it than running). So I took another week off. I stretched my hamstring and, amazingly, it got better when I wasn’t running on it. So I took another week off. I decided that I would run again when I felt like it. Day after day, I didn’t feel like it.

Then last week, my mind got stuck while working on a new essay. In writing, there is the required butt-to-chair time when the words manifest themselves on the page, but for me, I also need running time that frees my mind to go where it will while my body churns away at the miles.

I made my triumphant return to running last Saturday. Just three miles and I knew it would be hard, making me wonder how I had ever run 26.2 miles before and how I would ever do it again. I ran with a new friend on a route I like a lot, one that takes us on the canal path where there are always other runners, owners walking dogs, couples strolling with cups of coffee. We ran smoothly over the brick sidewalk, saying good morning to those who came our way.

A white haired man in old-school running gear came our direction, not terribly fast and with a little lurch in his stride. His left hand held his right arm to his chest as he ran, and when we drew closer, I could see that it was shriveled to half the density of his left. I said Good morning as we passed, and then Wow to my friend when the man was out of earshot. Wow, she said back.

When my friend slowed to walk, I ran on by myself. Now free of conversation, my thoughts drifted to my son who is 22 and only recently diagnosed with Asperger’s although he’s been this way his entire life. He hit a dark skid last fall where he stayed in bed all day, didn’t shower unless told to, didn’t go out, shrank back from the difficulties of the world. That’s when we sought professional help, that’s when the diagnosis came, and now he’s getting out of bed and doing a few things on his own, more each week, a slow stuttering rise to a new life. The social interactions are hard for him, going new places, doing new things, but equally hard to go old places and see people he already knows. But he’s doing it. He’s putting himself out there, making the effort, like the old man who has found his own way to run, holding himself together, not letting what he can’t do prevent him from doing the things that he can.

The route I ran turned down a dirt road and then along a short stretch of trail. The wet of the morning grass come through my running shoes. The trees arched over the path, dimming the sun, muting the world. When I picked up my right foot to clear the rocks and roots, that old achy hamstring sang out like an old friend. The path ended and I turned onto the road, the one that lead me back to where I started. My first run was done, not as hard as I thought it would be. It felt good to be back, in both mind and body, ready to begin my own arduous climb to the marathon.

To learn more about Gretchen Stahlman, check out her website!

(Photo credit: Gretchen Stahlman)

Filed Under: Aspergers Syndrome, Gretchen Stahlman, Guest Posts, Injury, running, Special Needs, WEGO Health, Writing Tagged With: , , , , , , , ,
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Autism Diagnosis: Changing The Landscape

January 13, 2012 By

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.

Filed Under: Aspergers Syndrome, autism, Autism Diagnosis, Autism Services, DSM-IV, DSM-V, PDD-NOS Tagged With: , , , , , , ,
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Why Autism?

July 19, 2011 By

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Causes of Autism, Childhood, Developmental Delay, Environment, Genetics, Learning Disability, Social Anxiety, Speech Delay, Vaccines Tagged With: , , , , , , , , , , , , , ,