By Adam Richardson
The News
On a sunny afternoon, Xavier, Kristian and Jaiden gather to play on backyard swings in Stellarton. They take turns on the slide, they're patient with one another and they're fair. There's no fighting over toys in the sandbox, and the line goes smoothly for the slide. Nothing seems out of the ordinary, and at the moment, nothing is. A child's smile can hide anything. Even Autism.
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In the crowded aisles of a local grocery store, Heidi Lindblad hears it.
"Why is that kid screaming? Can't you control your kid?" recalls Lindblad of her encounter with an impatient shopper.
The real centre of attention is Kristian, Lindblad's three-year-old son. He's screaming and crying, thrusting his mother into an unwanted spotlight, forcing a primal maternal defence to spring from the admittedly embarrassing situation.
"There is so little awareness for autism in our society," Lindblad says. "I just tried to explain to them that I was sorry Kristian was upsetting their day, but I unfortunately can't just walk out of every store when he starts screaming. He won't learn that way."
Kristian is autistic, a chameleonic disorder affecting one in 150 children. Autism is so unique in each individual sufferer that treatment is basically trial-and-error and case-by-case.
Some may be withdrawn, others outgoing and able to function within a group. What works for one child may not benefit the next.
It's not easy to spot. There are no physical signs indicating affliction, only the behavioural output from the autistic mind.
For many on the outside, this behaviour manifests itself in social awkwardness, tantrums, and unfocused conduct - the type of stuff one doesn't like to see, tries to avoid, complains about or walks away from.
Some sufferers will bang their heads off walls for attention. Others rock, flick objects or bite. Stacking things appears a common trait, but not an across-the-board "symptom".
Parents of autistic children are fighting a cause without a cure, a complication even the experts don't fully understand.
"Every day is a challenge, and some can be exhausting," Lindblad said. "You need to be so patient, and so careful. Everything is routine-based. There's no time for myself, and sometimes hardly any time for my daughter, who is five-years-old and needs attention, too."
••••
Wayne Sklarski knows what it's like to have a child in the terrible twos throw a tantrum in a shopping mall. His kids grew up and they grew out of such behaviour - it's a relatable experience for any mother or father.
"What stands out in an autistic child is these tantrums aren't limited to the terrible twos," said Sklarski, director for treatment services for the Society for the Treatment of Autism. "These kids don't necessarily grow out of it - they can throw the type of tantrum a two-year-old would when they're much older - and bigger. There's no sense of delayed gratification for many autistic children. They see something, they want it and they react - and this can happen early or much later in life, when others take notice and wonder why a child of a certain age would behave that way."
He recalled a situation where a child was upset with his mother in a mall, so he struck a stranger to vent the frustration.
"The autistic child might not think beyond the situation in front of them. Often, there is no later, no sense of place and no future consequences to their actions."
••••
On a Friday evening, Lindblad gathers a pair of women in her home from her local support group. Lisa MacLean and Tawnya Barrington each also have an autistic child, and they get together to chat, even if their individual stories don't hold much similarity. These women draw a bit of solitude from nights like this. There is time to relax, and ways to shift the mind from the hectic daily pace.
"I eat, sleep and breath Xavier," says Barrington of her five-year-old son currently suffering from the disorder. "I spend all of my time thinking about him, and I'm always planning what I have to do the next day. I hate saying it, but it's like there's him, and then there's everything else - when I have time or energy.
"When you're the mother of a special needs child, you spend so much time with them that there's an absolute, unbreakable bond. Every time you look at them, it feels like the first time you held your baby."
Costs can mount, and so can family pressures. Lindblad says more than 80 per cent of marriages with an autistic child end in divorce. She's living proof. Barrington married last year, and admits her time, money and effort to help Xavier put a strain on other aspects of family life.
Special books are needed in some cases, as speech, interaction and learning skills can develop slowly for an autistic individual - not out of lack of intelligence, simply a need to retain knowledge a different way. Research must be done to keep on top of new findings. Kristian eats a special, gluten-free diet - an expensive proposition for a single mother with another child to feed.
••••
"It's an awful thing to teach your child how to lie," Barrington says of her son's openness and necessity for routine. "Xavier only knows experience, so all he can be is honest. He'll ask, "why can't I tell that girl she has pimples? She must know she has them.' He must be taught tact, how to play along and be fake.
"Life is black and white for him, but the sad truth is that's not the real world."
All three mothers also have non-autistic children. There is the usual love among siblings, but every now and then, another child will asked why she doesn't get buckled in first on car trips - the term "flight risk" doesn't hold much water with a six-year-old.
Xavier's life is so based on daily rigours that everything must be planned - vehicle routes are always the same, meal times don't vary and the smallest details of daily life must be carried out accurately. Structure is like an elixir for Xavier - and he's made tremendous strides, the fruits of necessity and hard work.
"Xavier's come so far, and you need to keep working," Barrington said. "The meltdowns are getting rarer now, that's good. If they continued until he was 16, I'd worry because he'd be able to physically hurt me."
FACTS AND MYTHS ABOUT AUTISM
• The divorce rate for autistic parents is over 80 per cent.
• Not all autistic individuals possess special skills and genius abilities. Movies like Rainman created a stigma around the disorder. Less than 10 percent possess "savant" abilities shown in the popular Hollywood movie.
• Not all autistic individuals are withdrawn, avoid eye contact and engage in self-injurious behavior. Many are outgoing and work well within groups of children.
The faces of autism
The faces of autism
- Published on May 29th, 2008
- Published on December 30th, 2009
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Adam Richardson
There are many myths about autism but the truth is hidden behind a lack of awareness
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Comments
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- Kell
- - January 18th, 2010 at 13:40:33
Mr. Richardson, please take the opportunity to interview Lee, as he/she seems to have all of the answers that the world has been waiting for since, Autism was diagnosed. Perhaps with Lee's vast knowledge and expertise, Lee can appear on Larry King with Jenny McCarthy or John Schneider, both parents of Autistic children and explain to them what they and millions of other parents in North America are doing wrong with their Coddled Autistic Childern....
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- Lee
- - January 18th, 2010 at 13:38:10
I certainly learned when I'd scream or put a fuss up while in a store. Mom would haul me out and wouldn't let me go shopping with her again and I learned very quickly that I couldn't go shopping if I was going fuss. I disagree with society's method of coddling children.
Operant conditioning does work. Reward the behavior you want your child to exhibit. Remove rewards behavior you don't want to see warrants it. This should go for autisic and normal children alike. Children can be trained.
We have an autistic relative in our family, and he doesn't get taken out if he puts up a fuss. He has learned that if he behaves well, he gets taken out places - the same as any child would learn. Autistic people are actually quite intelligent - they shouldn't be treated as anything less. Instead of looking apologetically at the people the child is disturbing, or trying to explain it away as autism, try treating the child as you would any other. They misbehave, haul them away. They're well behaved? Treat them. Even autistic children can learn this!
Too many excuses for people who just don't want to deal with unruly children (more directed at ADD ... though ADD isn't autism... I find that people use ADD as an excuse to dope up their children - don't do that either. It's wrong.) Spend time with your children, teach them right and wrong, feed them properly, and yell at them less - they are children, after all. Simple math. Definitely don't yell at autistic children - they really don't understand. Just remove them from the situation.
I'm tired of seeing kids run around stores and parents yelling at them to behave, etc etc, and then just letting them run around some more. Your child is running around the store? Leave, with your child in tow. Don't bring them back until they exhibit good behavior (explain to them why it was wrong - in a calm tone). Because you yelling at your child is generally more disturbing to the general public than the child themselves.
And I think that every autistic person I've had the opportunity to meet has had some sort of genius ability. Henry Green (he's a number cruncher, and remembers birthdays like crazy), for example, from New Glasgow. My uncle, for another (can spell things ridiculously well, and has a knack for remembering names). They all have their own talent. It just needs to be recognized. -
- Deborahl
- - January 18th, 2010 at 13:13:10
My 10 year old cousin is autistic and every autistic child differs. Lee, I'm all for that approach with normal children but you can't always apply that philosophy on autistic children. Like Trish states, her child might do it because of a smell or other triggers, they aren't usually doing it so that mommy or daddy will buy them that box of cookies they want. This is where more understanding is needed of autistic children and not have people compare these kids to either normal children or retarded children. I love my little cousin, he is such a unique little guy. His mom has done well to educate us all on autism which has helped us greatly when being with him.
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- CES
- - January 18th, 2010 at 13:08:14
Prior to commenting on the 'abilities' of autistic individuals in accordance with 'operant conditioning', perhaps a little more focus can be placed on recent methods of assisting and by recent I mean the past ten years, as opposed to prior methods that are adversive. Sorry Lee, I find your response typical and ignorant. What works for one, does not work for all. If you cannot see your child as an individual no matter if they have one disorder, or the next. Then you might as well give him/her a bone, and tell the child to fetch.
Perhaps, rather than 'googling methods of intervention in autistic children', one might read when operant conditioning is effective and how it is used.
While in theory Skinner's methods look beautiful on paper, they do not always work as intended and used inappropriately, can cause more trouble than good. Suggested reading material is available, and if it pre-dates the mid-80's put it back on the shelf.
Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals by Catherine Maurice (Editor), Gina Green (Editor), Stephen C. Luce (Editor)
Ten Things Every Child with Autism Wishes You Knew (Paperback)
by Ellen Notbohm (Author)
and for good fictional reading with a better grasp of an Autstic mind....
The Curious Incident of the Dog in the Night-Time by Mark Haddon
Unless you are a trained professional or can give an educated response, DO NOT suggest methods to improve something you are rather ignorant about. No matter how well-intentioned it is. -
- Cathy
- - January 18th, 2010 at 12:57:02
Thank you Dr. Lee...seems like you have it all figured out, I look forward to your book.
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- L.S.
- - January 18th, 2010 at 12:56:08
Beautiful photo of Xavier!
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- Heidi Lindblad
- - January 18th, 2010 at 12:45:03
I am one of the mothers that put my family into the public eye to raise awareness and help myself along with other families dealing with Autism. I would love for Lee from NG to make themselves known and either justify their comments or just let me educate him/her about the daily challanges and meltdowns. I would love for you to spend a day with my family. I truely feel sorry for you, Lee because your ignorance is not acceptable in any way, shape or form. I am the best mother that I can possibly be and I have taken every intervention handed to me. I am currently receiving 10-15 hours a week from Autism Skills Workers, Speech and Language, Child Phychologist and Occupational Therapist, along with all the parent training I have had in the last year and a half since diagnoses and work with Kristian every waking hour and even when he is in daycare, they also have Autism training to work with him. As a single mother...I wouldn't be able to leave my home if I had to count on someone to watch Kristian, just because people feel he shouldn't be in public if he meltsdown. CRAZY..First, it is very hard to know when something will set him off and secondly I am teaching my 5 year old that if you have nothing good to say, don't say anything at all. All I ask is that the next time you see a mom or dad struggling with the behaviors of a child. Take a moment to stop and think...even though this child looks perfectly normal, maybe this child has a underlying problem, such as autism that is making this child act this way. Pls do not say anything... It truely means more than anything. In conclusion, to the one negative person.... we meet many compassionate people and that is what gets us through.
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- Angela
- - January 18th, 2010 at 12:44:49
This is a very good article. I have met a few Autistic children and adults, and I can say they all do things differently and they all learn differently. Just like other children. Take every child out of a store when they act out and guaranteed it wont work for all.... Every parent has to find what works for them.
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- JAC
- - January 18th, 2010 at 12:38:53
Ms. Lindblad I would like to comend you on putting so much effort into the welfare of your child and for letting us see asmall part of your daily life with Autism. hopfully it will change the opinion of many people. This gose to the other parents in the article as well.
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- Natalie
- - January 18th, 2010 at 12:26:27
Wow,Lot's of comments on this topic, tells me general public needs lmore education on Autism . Even what methods of teaching children are appropriate and effective. When we are judging parents in grocery stores, dirty looks,shaking heads expecting them to leave ect, we are only adding to the problem,I am guessing. I think we need to have some empathy, parents of children with Autism, please respond, you the best ones to say what you need.
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- Lisa
- - January 18th, 2010 at 12:06:57
I would give anything to be able to 'explain' to my daughter that she needs to behave. I can't. Aside from the fact that she is in a full tantrum, she has autism. Instead I have to ignore her screaming, crying, hitting etc, to try to teach her that negative behaviours do not get her what she wants. She has thrown tantrums for typical reasonswanting candy or a toybut most are because of sounds, noises, and even for reasons I cant explain because I dont know. Ceiling fans were the worst. Imagine going into a store that had ceiling fans, (most stores do), have your child look up, see the fan and immediately meltdown. Not just crying but screaming, petrified, plugging her ears and trying everything she possibly can to get back out of the store. It took months of tantrums and crying to get her to realize it was ok to be in a store with ceiling fans. If I had taken her out as soon as she started she would learn that her negative behaviours get her what she wantsto leave. I could tell many stories about her tantrums and the negative looks, comments etc that I get from people who dont understand or even try to but think she is just an out of control brat. I know it is hard listening to it. I do it on a daily basis. Just next time you see a crying, screaming child who is not being taken out of the store, don't judge but take a moment to think there may be more to it than just a toy.
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- JAC
- - January 18th, 2010 at 12:01:09
i personaly work with adults with autism and do work with children with autism in there home. how can someone say that everychild and adult dont have the rights to go to the grocrie store or to a parade etc. we need to take autistic people out into the community because they have every right to be there. As care givers we dont know if an autistic person will have a tantrum and if they do soo what... they have a reason for acting the way they do... Autism is a mystery no one knows its cause or what sets off behavious. how void someones life would be if just because they might possible have a tanturm they were confined to the 4 walls of there home. that is not fair and it not right.
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- Natalie
- - January 18th, 2010 at 12:00:36
Great article on Autism,Really liked the facts and myths.Plus real faces and individual stories makes us all think.
Maybe we can all put a little less judgement on children's behaviors in public places and become more understanding .I have worked with parents for many years now and I have never met a parent that wasn't doing their best. -
- Trish
- - January 18th, 2010 at 11:57:13
Very good article. Unless you are a parent or primary caregiver of a child with autism or a developmental disorder of this type, you can not possibly understand what happens 24/7. The triggers are as varied as the behavior. I remember my child throwing themselves onto the floor in the middle of the mall and banging their head off the tiles because they either smelled the wrong smell, noises were too loud, or something else, I have yet to figure that out, twenty years later.
I was mortified and one lady walked by and said very loudly, disgusting. Not one person asked if they could be of assistance. As much as I hated exposing my child to this narrow-minded ridicule, I still had to buy groceries and pay bills and finding child care was a whole other ballgame. Training a child to button his jacket may take a week, training an autistic child to button his jacket may take months. Whenever I hear a child screaming in the mall, my heart breaks, I've been there. I always ask if I can be of assistance. -
- Mel
- - January 18th, 2010 at 11:56:26
Lee's comment just proves that more public awareness is OBVIOUSLY needed.
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- Tara
- - January 18th, 2010 at 11:40:37
Well said Heidi and Lisa. Your strength is amazing and warms my heart. Your children - beautiful and so intelligent. Congratulations on trying to make such a mysterious condition more known to ignorant minds such as Lee. and to Lee... please think before you write and educate yourself some will you.
Miss you Jaiden ;) -
- Kim
- - January 18th, 2010 at 11:36:33
I would just like to say my hat is off to all you mothers and fathers of children with Autism. I work with a young Autistic girl and I learn more and more each day I am with her about how different each day in the life of Autism can be. I myself have a son with Developmental Apraxia. And I fine it hard to deal with that at times when I can not make out what he is trying to tell me.and when he gets mad at me and acts out. People do not know just what the reason is but they all seem to think they do and I just wish for once they would keep there remarks to themselves. Now as for Dr. lee I see you think you have it all worked out when it comes to Autism , I would love to know if you have a office I could call so maybe you could help me with my son and his Developmental Apraxia. As I am sure there are a lot of mothers that would love to talk to you and maybe educate you on what you believe you have the answers for . I also took CCA, I am a continuing care assistant, and I believe there should be more teaching of Autism in that class as there seems to be more and more children with Autism nowI would also like to know more about it myself.
