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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.

 

 

 

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5 Myths About Autism That Really Have To Go

 

Sharing a laugh with George

Sharing a laugh with George

1. People with autism are violent

Whenever there is a mass shooting, at least one media outlet makes a point of mentioning that the perpetrator “was probably autistic” or “was suspected of having Aspergers”. This kind of reporting is irresponsible, groundless and discriminatory. Yes, it is true that some people with autism have violent tendencies, but that is also true of the general population. Some black people have violent tendencies, but we don’t go around saying that the perpetrators of crimes “were probably black”, because that would be inexcusably racist. In any case, numerous statistics have shown that people with autism and other developmental disabilities are more likely to be victims of crime than perpetrators. I could go on about this all day, but instead I will point you to this excellent post written by my friend Sophie Walker.

2. People with autism have to follow special diets

Autism parents are always being told to change their kids’ diets. We are bombarded with messages telling us that everything we buy at the grocery store is aggravating the autism and poisoning our families. We are pushed towards the gluten-free, lactose-free, sugar-free, everything-free versions of foods, and there are two problems with this. First, in many cases it is not necessary. Second, these special diets cost an absolute fortune. Many autism families can barely make ends meet as it is – it is wrong to expect them to stretch themselves even further by spending money on expensive foods that in most cases, won’t make a difference. The proper way to do it is to have the child properly tested by a qualified professional, and then make any dietary changes that are needed.

3. People with autism are not capable of empathy

Last weekend, I was at a park with my kids. James was playing on the slides and George was sitting on the outskirts of the play area, contentedly picking up handfuls of sand and letting it slip through his fingers. All of a sudden, I heard a cry of pain, and I looked up to see that a little girl of nine or ten had fallen off the swing. She was lying on the sand crying, and the swing was moving back and forth like a pendulum above her head. Without hesitation, George leapt up and ran to the little girl. He stopped the swing from moving, and guided her out from underneath it. Then he simply stood there beside her until her mother reached her. The moral of this story is: don’t tell me that my child with autism is not capable of empathy. Like many kids with autism, he is capable of empathy, but he doesn’t always know how to express it.

4. People with autism are geniuses

Honestly, Rain Man has a lot to answer for. Because of that movie, people keep asking me if George can instantly do large math sums in his head, or identify with a single glance how many Cheerios have fallen out of a box. The answer is no. He can’t. He’s an intelligent child with problem-solving skills that will stand him in good stead through life, but I have to be realistic. The kid isn’t a genius, nor would I expect him to be. True savants, like artist Stephen Wiltshire, or musician Derek Paravicini, are rare.

5. People with autism don’t understand what’s going on around them

Sometimes I find myself in conversations with people who are asking me about autism, talking about George’s future and making comments on his limitations. I am always happy to have these conversations, but not necessarily in front of George. He may have autism, but he has ears that work, and he understands more than his limited speech lets on. On a related note, it drives me crazy when people ask things like, “Would he like a cup of juice?” when he’s standing right there. If you want to know what George would like to eat and drink, ask him, not me. He often needs help to answer questions, but he should at least be given the opportunity to try. How is he going to learn to have a conversation if people keep talking about him and not to him?

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

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Creating Stories Out Of Life

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Out of all the concerns I have about my son’s autism, the biggest is his communication impairment. He has the physical ability to talk, and he has a perfectly good vocabulary. He routinely states needs and desires using full sentences, and he even makes the occasional little joke, but the kid does not have conversations.

The reason this is such a big worry for me is that he cannot talk to me about things that happen to him during the day. If I ask him what he did at school today, he cannot tell me. If something was going on that shouldn’t be, such as bullying or inappropriate touching, he wouldn’t be able to express it. It’s not a problem now, while he’s young and under the supervision of trusted adults at all times, but he’s not always going to have that protection.

For a long time, I have been practicing the art of conversation with George. I ask him a series of questions and then reward him for giving appropriate answers. Perhaps more importantly, I expose him to conversations as much as possible so that he can learn by osmosis, the way he’s learned many of the life skills that he has acquired.

So far, I’ve had limited success with this, but I never lose hope that some day he will get it. This is a child who took nine months to learn how to point. The length of time it took was not nearly as significant as the new skill. So I don’t give up, ever.

A very recent development is that George is learning to communicate his experiences in his own way, by turning them into little stories. I first noticed this over the weekend, when we were driving home from a fun afternoon at the water park. George, who almost never utters a full sentence that is not a request, suddenly came out with a bunch of them, one after the other.

“Dad drove to the water park. George got wet. James got wet. The children got wet. Everyone got wet. Oh nooooo!”

While I thought this was absolutely phenomenal, the full significance of it went over my head at first. It was not until an incident yesterday that I realized what this could mean for George’s communication.

George has a fascination with water running out of taps, and he turns taps on as far as they will go, and then just lets them run. Usually we’re able to keep this in check, but occasionally he gets out of sight, the way kids do. He turned on a tap in the upstairs bathroom that just happened to be temporarily disconnected from the plumbing. A pile of water went into the space beneath the floor, which is also the space above the ceiling of the living room downstairs.

We didn’t know that George was turning taps on and off, but when water suddenly started gushing from the living room’s light fixture onto the carpet, we had a clue that something might be wrong.

A flurry of activity followed, like laying towels down on the living room carpet, and drilling holes in the ceiling to allow the water to drain out. While this was going on, George was hovering nearby, simultaneously nervous and excited. There was no doubt that he knew he was responsible for the chaos, and he seemed to be anxious yet oddly proud of his accomplishment.

All of a sudden, he produced another group of sentences.

“George turned on the tap. The carpet got wet. Dad stood on the ladder. Dad got cross.”

That is when it hit me that George was starting to use simple little stories to communicate events from his day, and that this could be the key to conversation that I have been searching for. I feel that I now have something to latch onto, something that I can encourage and expand on.

I am beyond excited about this. I have a feeling that we are on the cusp of some fantastic developments, and I will be listening out for more of George’s little stories.

(Photo credit: Bludgeoner86. This picture has a creative commons attribution license.)

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There is No-one Alive Who is Youer than You

Although I am a bit behind on my prompts, I am participating in the WEGO Health “Advocating for Another” carnival, in which I describe our lives as an autism family.

Today’s prompt (OK, yesterday’s prompt): Quote, End Quote. Post – Let someone else’s wise words inspire you. Find a quote that moves you in some way then free-write about it. Don’t stop writing for 15-20 mins. Now post!

Dr. Seuss was a wise man. He had so many profound things to say that one could be forgiven for thinking he was a philosopher disguised as a children’s storybook writer. I am raising my children to live by the words of Dr. Seuss, because he really did have sound advice for every occasion.

A couple of years ago, I came to the uncomfortable realization that I had fallen into the habit of inadvertently defining my son by virtue of his autism. It was always the first thing I told anyone.

When asked about my family, I would volunteer the information that I was married with two boys. “My older son has autism,” I would say, as if my audience just had to know that about George.

The truth is that I have been so determined to be open about my son’s autism in order to knock on the head any notion that there should be a stigma attached to it. But I started wondering if perhaps I was doing my son a disservice by labeling him from the outset, and thereby creating an instant perception that was based on his diagnosis, and not on who he is as a person.

So I decided to change my approach. While I will never, ever make any effort to hide the fact of George’s autism, I no longer make a point of stating it up front. Because George is not just a boy with autism. He is a boy, a beautiful person with individuality and many great qualities, and he has the right for people to get to know him as such.

The subject of autism always comes up, and it never takes very long. I am always happy to talk about autism and the challenges of special needs parenting, but now it is something that arises naturally in the course of conversation. I no longer treat it as the central element to my son’s existence.

I want George to grow up knowing that he is loved and valued because of the person he is. There is no-one in the world like him, and every day I thank my lucky stars that I’m the one who gets to be his mother.

(Photo credit: Brendan-c. This picture has a creative commons attribution license.)

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Autism And The Art Of Conversation

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)

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Autism Through A Child’s Eyes

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

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Reaching For The Rainbow

George admiring the rainbow

Three days ago, I saw a rainbow. It was big and bright, a perfect arched gate in the sky. I was in the company of my husband and my older son George, for whom the world is sometimes a source of wonder, sometimes mystery, sometimes bewilderment.

For George, the rainbow fell into the category of wonder. In his eight years, he has seen other rainbows, but none that stretched all the way across the sky like this one did.  He clambered out of the car and hoisted himself onto the seat, grabbing onto the roof rack from the open door. He seemed to be trying to get himself as high up as he could go, as if he wanted to reach out and touch the rainbow.

The magic of the rainbow followed George around for the rest of that day.

In the evening, when it was time for him to go to bed, I tucked him in and, as always, spent a bit of time talking to him, asking him simple questions about his day. These bed-time conversations tend to be a bit one-sided: out of all of George’s autism-related difficulties, poor verbal communication is one of the most troubling. Usually his responses need a lot of prompting. On this particular day, though, he had no trouble at all. When I asked him what he had seen today, he whispered, “Rainbow!” and drifted off to sleep with an angelic smile on his beautiful face.

I sat there for a while watching him sleep. I hoped he was having blissful dreams about rainbows.