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Book Review: Beyond Rain Man by Anne K. Ross

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.

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Autism Doesn’t End At Five: Aaron’s Story

Today’s “Autism Doesn’t End At Five” series features the story of Aaron, who is four years old. Even if he reaches the top of the IBI waitlist before his fifth birthday, which is unlikely, he will only receive services for a short time before his age deems him ineligible.

autism doesn't end at five - aaron

Aaron was diagnosed with autism when he was just two years old. His mother had done the research: she knew that an early diagnosis followed by early intervention would improve her son’s chances of a good outcome. She was hopeful that now that Aaron had been diagnosed, she would be able to access services for him.

Instead, she found herself and her son being placed onto one waitlist after another. While Aaron is waiting his turn for IBI services, he is missing the developmental window identified by the Ontario government. Now almost four, he still technically qualifies for IBI, but considering that most children spend two years or more on the waitlist, he is unlikely to get to the top of the list by the time he turns five.

Aaron has been identified as being on the severe end of the autism spectrum. He has many challenges: among other things, he is non-verbal, he has limited eye contact, and he is not able to use the toilet independently. Many children have made tremendous gains in all of these areas thanks to IBI therapy.

In spite of his challenges, Aaron has many strengths for IBI service providers to build on. His mother describes him as a “puzzle wizard and builder extraordinaire”. This indicates the presence of strong problem solving skills and solid learning capabilities. Everything points to Aaron being an ideal candidate for IBI, and that is not going to magically change on his fifth birthday.

A year from now, Aaron will still be highly likely to reap enormous benefits from IBI therapy. But a year from now, the Ontario government will cut off his access to this critical therapy simply because of his age.

Aaron’s parents, who also have five-year-old twin girls, are now talking about private therapy. They refuse to give up on their son, but helping him is going to result in upheaval for the family. They are listing their home for sale in an attempt to pay for IBI therapy themselves. No family should have to go through this kind of stress – especially in a country like Canada, which prides itself on human rights and equal opportunities for all people.

“My heart aches for my son and I need to stay strong to be his voice in any way I can.” – Kelly, Aaron’s mother

By Kirsten Doyle. Photo courtesy of Aaron’s mother, Kelly.

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Autism Doesn’t End At Five – Jolie-Anne’s Story

Our “Autism Doesn’t End At Five” series continues today, with the story of Jolie-Anne. In spite of steady success with IBI, Jolie-Anne is no longer eligible to receive services, simply because of an arbitrary age cut-off imposed by the Ontario government. If you have a story that you would like told, send an email to kirsten(at)runningforautism(dot)com.

autism doesn't end at five - jolie-anne

When Jolie-Anne was just twenty months old, her mother suspected that she might have autism. After spending eighteen months on a waitlist for a developmental assessment, she was formally diagnosed when she was a little over three years old.

For the next three years, Jolie-Anne was on the waitlist for provincially funded IBI services. During this time, her mother dug deep into her bank account to pay for whatever early intervention she could afford – speech therapy, occupational therapy and ABA social groups.

Jolie-Anne’s fifth birthday came and went, and she was still on the IBI waitlist. Her parents were no longer prepared to wait – they decided that until the government came through, they would find a way to foot the massive bill for IBI themselves. They felt that they had little choice: in the months leading up to this decision, Jolie-Anne had made virtually no progress in spite of being in a special needs classroom with a full-time EA.

Almost immediately, Jolie-Anne’s family and IBI providers started to see a difference. For the first time, she had a voice. She started using words, making eye contact and forming friendships. She learned how to state her name, age and address. She acknowledged her grandfather for the first time and gave him a hug.

The progress came at a tremendous financial cost to the family. Jolie-Anne’s parents were overjoyed and relieved when they were finally granted government funding for IBI services in September last year. Jolie-Anne continued to acquire new skills and meet the therapy goals that were laid out for her.

Sadly, thanks to the Ontario government’s new policy to deny IBI services to children aged five and above, Jolie-Anne will not be able to continue with IBI therapy unless her family is able to stretch themselves financially, even more than they already have.

Jolie-Anne’s mom is thinking not only of her own daughter, but of other children who are impacted by this new policy.

“I think of all the kids, who like my daughter could start IBI at age five or later and benefit from the same life-changing results, but they will not have that opportunity. I am heartbroken.” – Tia, Jolie-Anne’s mom

It is more than a little disturbing that any government can decide that children are no longer deserving of life-changing therapy simply because they have reached a certain age. It is cruel to give the families of children with autism hope only to snatch it away. It is short-sighted to deny a child services that would enable him or her to ultimately get a job and contribute to the economy.

By Kirsten Doyle. Photo courtesy of Tia, Jolie-Anne’s mom.

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Autism Doesn’t End At Five – Xander’s Story

Today we continue our series of stories about children with autism in Ontario. The Ontario government’s recent announcement that IBI services are no longer available to children aged five and older has had devastating consequences for many families, including the family of six-year-old Xander. If you have a story to tell, send an email to kirsten(at)runningforautism(dot)com.

autism doesn't end at five - xander

When Xander started provincially funded IBI services in December 2015, his family breathed a sigh of relief. He was two months shy of his sixth birthday, and he had been on the waitlist for three years. His initial baseline assessment showed delays in several areas: he was not consistently responding to his name, his vocabulary was extremely limited, and he struggled with tasks like tracing letters and using scissors. Back then, he could not even tolerate sitting at a desk for any length of time.

Xander’s IBI team identified fourteen therapy goals for him to work towards. That is a lot for any child to accomplish. But Xander quickly became a poster child for the effectiveness of IBI therapy.

Within three months, he had accomplished – and in some cases surpassed – every one of those fourteen therapy goals. He was responding to his name and he could recite his home phone number. His vocabulary was growing steadily and he was learning to make requests verbally. He developed the ability to follow simple instructions, and he could now sit at a desk working for up to ten minutes.

In other words, IBI had given Xander the building blocks, a solid foundation upon which to build. In the next phase of IBI, he was going to build on that foundation and learn how to use his newfound skills in a functional, meaningful way.

That, at least, was the plan. Then the Ontario government came along with its announcement that IBI will no longer be provided to children aged five and older. Children of that age who are already receiving IBI services are going to be phased out of the program.

This news has been a devastating blow to Xander’s parents. In just a few short months, they saw their son start to blossom. Now they are faced with the prospect of him losing access to a method of intervention that has unlocked all kinds of potential in him. The future, that was looking so full of promise, is once again uncertain.

The Ontario government is trying to sugar-coat this by saying it is in the best interest of the kids. They are offering affected families one-time payments that do not come close to making a dent in the expense of IBI therapy. The alternative services they are offering to older children is not nearly as effective as IBI.

Xander’s story is one of a myriad tragedies affecting Ontario families in the wake of this announcement. He is living proof that IBI can and does work for older children, and unless some kind of miracle happens, he could become living proof of what happens when you remove such a crucial service from a child with autism.

By Kirsten Doyle. Photo courtesy of Xander’s mom, Shannon.

 

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Autism Doesn’t End At Five: George’s Story

This is the first in a series of stories in response to the Ontario government’s announcement that IBI services are no longer available to children aged five and older. This disgraceful, discriminatory policy ignores the fact that autism doesn’t end at five. If you have a story that you would like told, send an email to kirsten(at)runningforautism(dot)com.

George: autism doesn't end at five

My son George was diagnosed with autism when he was almost four, a full year later than he should have been (the doctor’s initial refusal to refer him for an assessment is another story for another day). By the time he had gone through the government assessment and been deemed eligible for services (yet another story for yet another day), and served his time on the waitlist, he was a couple of months past his fifth birthday.

You know, that magical cut-off beyond which, according to the Ontario government, kids can no longer benefit from IBI therapy.

When George entered IBI at five years and three months, he functioned at an eleven-month level on verbal abilities, and at sixteen months on non-verbal abilities. His overall level of functioning was fourteen months.

He had a follow-up assessment at the age of six years and five months, a little over a year after starting IBI. The results were staggering. On verbal abilities, he was now functioning at 35 months, and on non-verbal abilities he was functioning at 51 months. Overall, he was at a level of 39 months.

Can we do the math here? My son gained almost two years in verbal skills and almost three years in non-verbal skills. Overall, he made gains of 25 months in a fourteen-month period.

These gains translated into an explosion of progress that was visible to everyone. George started to learn simple skills like getting dressed and using the washroom without assistance. He spelled out full, grammatically correct sentences using alphabetic fridge magnets, and for the first time, he was making his requests verbally. When he was six, he made his first deliberate joke, and we started to see his funny, quirky sense of humour.

There are no words to describe how grateful I am that George was born at the time he was, that he turned five in 2008 and not 2015 or 2016. Because in the new reality created by the Ontario government, he would have missed out on that rocket-like trajectory of progress. He would not be where he is today – a happy twelve-year-old who, while still clearly autistic, shows incredible amounts of potential.

I feel a sense of survivor’s remorse. I feel devastated for all of the parents who will not get the experiences with their kids that I had with George. My heart breaks when I think of the potential that is being flushed away, the kids who are being left behind, the parents whose hopes have been shattered.

IBI can and does benefit children of all ages. Nobody should be left behind because of an arbitrary age cut-off, because autism doesn’t end at five.

By Kirsten Doyle. Photo credit to the author.

 

 

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Autism Doesn’t End At Five

Autism doesn't end at five

It has been a long time since I have posted here. I have been dealing with the stress and chaos of life. This is nothing unusual, and it certainly does not set me apart from other people. Lack of time is a symptom of twenty-first century life. Several weeks ago, though, something strange happened in the Ontario autism community. The provincial government announced that it was cutting off IBI services to children with autism aged five and older, and while other autism parents organized and attended protest rallies and made YouTubes, I was shocked into immobility. I decided to use my platform as a writer to send the message that autism doesn’t end at five, and I collected stories from autism parents. But then I was attacked by a massive case of writer’s block. This news is so big and so devastating, and I was struggling mightily to process it.

For those who are not familiar with IBI, it stands for Intensive Behavioural Intervention. It is one-on-one therapy that is administered for several hours a day, usually over a period of two or more years. It is based on a system of prompts and rewards, and it is tailored for each child that receives it. While there are some exceptions, IBI is highly effective for children with autism. When I say “highly effective”, what I really mean is “potentially life-changing”.

The Ontario government is telling parents that IBI is not effective for children aged five and older. There are many of us who know better. This week, I will be sharing stories of children whose experiences defy what the government is claiming. I will also share stories from parents who have suffered the devastation of having their children removed from the IBI waitlist.

The first story, featuring my son George, will be posted tomorrow. If you have already shared your story with me, it will be posted this week. If you have a story that you would like to have told, send an email to kirsten(at)runningforautism(dot)com. I promise to publish every story that I receive. No voice should be left unheard.

The Ontario government needs to get the loud and clear message that autism doesn’t end at five.

By Kirsten Doyle. Photo credit: QUOI Media Group. This picture has a creative commons attribution license.

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10 Things That Shouldn’t Be Assumed About My Child With Autism

autism

1. Don’t assume that my child has low intelligence. Kids with autism are often capable of more than we give them credit for. Many of them have varying degrees of communication delays, which is why people don’t always realize the extent of their intelligence. As a result, they are often excluded from games and activities, when they should at least be given the option of participating.

2. Don’t assume that my child is a genius. When I tell people that my son is autistic, they immediately assume that he’s like Rain Man. Autistic savants do exist, but they are extremely rare. My son does have his strengths, and some of them could well turn out to be career material. But he’s unlikely to be the next Einstein, and people should not expect him to have some savant-like party-trick up his sleeve.

3. Don’t assume that my child doesn’t understand anything you say. Speech development in kids is divided roughly into two categories: expressive language (what a child says, or expresses) and receptive language (what a child understands, or receives). For many kids with autism, receptive language far outpaces expressive language, meaning a child who is non-verbal can understand and process a lot of what is said to him or her. It drives me crazy when people say things like, “Would your son like some juice?” when he is standing right beside me. Ask him if he’d like some juice. There’s a decent chance that he’ll answer, and the best way for him to develop his language skills is by practicing them.

4. Don’t assume that my child understands everything you say. Autism is an invisible disability. Apart from a very slight awkwardness in his gait, my son looks just like any other kid his age. You cannot tell just by looking at him that he has a disability. Therefore, one could be forgiven for assuming that he has the same language capabilities as other kids. If my son hesitates to answer you or act on what you’re saying, try breaking down your sentence into smaller, simpler chunks.

5. Don’t assume that my child “needs discipline”. Yes, I have on many occasions been “that mom”. You know, the one everyone is staring at because of her child melting down in the grocery store or making loud vocalizations in a restaurant. Most people, to their credit, are very understanding once they know that autism is in the picture, but there are always those who insist that a swift smack on the behind is all that is needed. I once had an elderly woman telling me, “In my day, no child was autistic because we were raised with discipline.” Here’s the truth: a meltdown can be awkward and uncomfortable for the parents and any onlookers, but it is a thousand times worse for the overwhelmed, anxiety-ridden child who is experiencing it.

6. Don’t assume that my child isn’t capable of misbehaviour. My son is twelve, and he has a twelve-year-old’s attitude. He is going through the same moodiness and unpredictability that other pubescent kids go through. It is easy to use autism as the default explanation for his behaviour, but as a doctor told me many years ago, “He is a boy with autism, but he is first and foremost a boy.” I have become quite adept at distinguishing my son’s “autistic” behaviour from his “typical bratty kid” behaviour, and I react accordingly.

7. Don’t assume that my child is incapable of emotion. Because he really isn’t. One of the biggest misconceptions surrounding autism is that autistics do not have the capacity for love and empathy. My son is one of sweetest, most loving people I have ever come across. He is full of hugs for the people he loves, and making people happy brings him joy. Here’s something he has done since he was little: when he wakes up in the middle of the night, he gets up to check on his younger brother and make sure he’s covered with a blanket.

8. Don’t assume that my child knows how to react to emotion. My son is undoubtedly an emotional being, but he does not always know how to respond to the emotions of others. And when he doesn’t know how to respond, his default reaction is hysterical laughter. This understandably appears to be incredibly insensitive to someone who is crying, but it’s a simple case of my son not knowing how to process something. He knows that crying is associated with sadness – he simply doesn’t know what to do with that.

9. Don’t assume that my child is not a social being. It is true that at times, social gatherings make my son uncomfortable. His tolerance for noise and crowds is definitely lower than that of most people, and for that reason we always choose to have events like Christmas and birthday parties at home. That way, he can retreat when he needs to. But in general, my son likes people. He likes being around them and interacting with them in his own way.

10. Don’t assume that my child is socially aware. To my knowledge, my son has never been around anyone who would deliberately want to do him harm. At his school, the general student body is tremendously respectful and protective toward the special needs kids. I have never had to worry about bullying or discrimination, but I know that this may not always be the case. My son is very trusting, as many people with autism are. He has limited sense of danger, as many people with autism do. He does not really have the capacity to understand that people can act nice but have not-so-nice motives.

This is an original post for Running for Autism by Kirsten Doyle.

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Autism Diaries: On This Day…

the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

This is an original post by Kirsten Doyle. Photo credit to the author.

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Running For Autism: One Step At A Time

running for autism

Two days from now, I am running my annual half-marathon for kids with autism. You’d think that after doing ten half-marathons in the last six years, this would be old hat to me. I am familiar with the distance, and since this year is my seventh Scotiabank Toronto Waterfront race, I am familiar with the course. I know exactly where the hills are (not many, thank God, and none of them are exactly mountainous), I know where the halfway point is, and I know which sections of the course are more challenging for me.

The training, the period of Taper Madness and the race itself are supposed to get easier with each passing year, right?

Well…

This year, my family has faced some intense challenges. A series of unfortunate events culminated in my husband having just three weeks’ notice to vacate his business premises. This meant packing up and moving fifteen years’ worth of product, tools and heavy industrial-grade machinery. While this was going on, I landed a big contract for my own fledgling business that I couldn’t turn down. I was helping with the move during the day, working on my contract at night, and grabbing catnaps on the couch from time to time.

This left me no time for running. My half-marathon training called for intense speed work during the month of July. Instead, my training ground to a screeching halt, and I was only really able to get it going again halfway through August. By then, as much as I had tried to keep my work on an even keel, I had fallen so far behind that I was continuing to work late into the night. So although I was running again, I wasn’t running as much as I needed to.

Consequently, I am not as prepared for this race as I should be. I know I can complete the distance, but I do not expect it to be my finest hour. I don’t even have a goal time in mind. All I want to do is cross the finish line, get my finisher’s medal, and come home where I can sit on the couch and eat weird amounts of cheesecake. If I get a decent time – and I’m certainly not ruling that out – that will be a bonus.

My fundraising hasn’t gone as well as I had hoped either, for pretty much the same reasons. Asking people for donations makes me feel more than a little awkward at the best of times, and this year it has been particularly challenging. I haven’t had time or energy, and I have been operating in a fog of exhaustion and stress. I have fallen far short of the fundraising goal that I had set for myself.

But still – I have raised almost $300, and that money is going to make a huge difference to some kids with autism. It will provide art supplies, musical instruments, sports equipment or camp activities. It will give young people with autism opportunities and experience that might otherwise be out of reach for them. And I am more grateful than words can express to the people who have helped me reach that total.

I think, in spite of the circumstances, I have done all right. I feel excited about the upcoming race, and I feel proud to be doing my small part to make a difference to children and youth with autism.

It’s not too late to donate. If you would like to sponsor me, please click here. All funds go to the Geneva Centre for Autism, where they will be used to provide services for children and teens with autism.

This is an original post by Kirsten Doyle. Photo credit to the author.

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Autism And Mental Health

I'm Blogging for Mental Health 2015.

My son George hops off the yellow school bus and bounds up the driveway with his fingers in his ears – a throwback to last summer, when the sound of the tree-feller’s chainsaw hurt his ears. He shucks off his backpack, removes the hoodie that he will not abandon even during the height of the summer, and kicks off his shoes. Then, and only then, am I permitted to talk to him.

“How was school?” I ask him, as I always do.

“School was fine,” he says, as he always does.

“What did you do today?”

He doesn’t reply. Instead he starts peering at the brim of his hat, or running a finger along the edge of the door frame.

“George?” I ask, needing to engage him before he gets too far into his own head. “What did you do at school today?”

“School was fine,” he mutters.

“Tell me one thing you did today.”

“Played outside,” he says, after a pause.

“And what did you do outside?” I ask, hoping I’m accomplishing the tone of gentle persistence that I’m going for. He cannot feel forced, but he needs to know that I’m not giving up on this conversation. It’s a delicate balance some days.

“Kicked the soccer ball,” he says.

“Wow, that sounds like fun!” I say effusively.

Sensing that he’s fulfilled his obligation to talk, he runs off to turn on his computer. I sit on the stairs for a moment, feeling both exhausted and elated by the fact that I actually had a conversation – albeit a brief one – with my son. For most kids, this kind of exchange would not be a big deal. For George, it is.

George, now eleven years old, was diagnosed with autism when he was three. We had him assessed because he wasn’t talking, and even though he has come a long way since then, his speech and communication skills are far below those of his typically developing peers. This comes with a number of challenges, but there is one challenge in particular that I have never really spoken about.

How do I know if he’s OK?

I’m not talking about “OK” in the physical sense. George is able to tell me when he feels sick, or when a part of his body is hurting. He has even started to identify emotions, telling me when he’s sad or angry.

What I’m talking about is whether he’s “OK” from a mental health perspective. With my younger son, who is typically developing, it’s fairly simple. I have conversations with him, I talk to him about how he’s feeling, and from his natural expressiveness I can get a sense of whether everything is all right or not. I am well aware that childhood depression is a very real problem, I know what signs to look out for, and I have a reasonable degree of certainty that I would recognize it in my younger son.

With George, it’s a little more complicated, and from a statistical standpoint, it’s more of a concern. Individuals with developmental disabilities are more likely than the general population to experience mental illness, but they are less likely to be diagnosed, because it’s less likely that the people around them will realize that something is wrong. George, with his speech delays, does not have the words or the cognitive functioning to describe depression in a way that would enable me to recognize it.

Even the behavioural cues present in typically developing children may be different for those with special needs. It is easy – far too easy – to blame everything on autism. When a child with autism has a meltdown, or starts to cry for no reason, or gets lost inside his or her own head, everyone assumes it’s because of the autism. That is not unreasonable: in many cases, it is because of the autism.

But what about those times when it isn’t? What about the times when a child is banging his head against the wall because his mind is in a dark, desolate place and he doesn’t know how to express it? What if the other-worldliness is not symptomatic of autism, but of withdrawal? What if no-one realizes that depression has become the child’s companion, because in their well-meaning attempts to manage the autism, they just haven’t thought to consider anything else?

These concerns are part of what drives me to try to have conversations with George. Every single thing he can tell me – no matter how small it might seem – is like a golden nugget that I treasure. I lavishly praise his attempts to communicate, and every day, I encourage him to tell me something – anything – that happened to him that day. It is my hope that if, at some point, anything is going on in his life or in his mind that he needs help with, that will be the thing he tells me about that day.

This is an original post by Kirsten Doyle, written for APA’s Mental Health Blog Day. Picture attributed to the American Psychological Association.