Autism Speaks Canada

This post is by Susan Cosgrove, RECE RT, aka Liam’s Mom. To see Susan’s special photography for special families visit her website: www.susancosgrovestudios.com

Our Children Are Children First
We do not define our children by their disorder and neither should you. In movies and in the media, you often get the message that our children cannot understand or show emotions. This is not true. Our children are loved and show love. They just show their feelings differently than your children do. Our children are just like any other child. They need love, stability and understanding to thrive.

Autism Is A Spectrum Disorder
This means that every person with autism is affected differently. Some children do not speak at all. Other children babble uncontrollably. They may repeat the same phrases over and over again. Other children may be able to carry on a conversation. They all have autism, yet they are all unique individuals like you and me. Autism affects people of all backgrounds and intelligence levels. Having autism does not mean a child is mentally delayed. Some brilliant inventors and mathematicians in the past have had autism. Many children with autism grow up to be successful members of society.

Our Children Have Sensory Issues
Almost all children with autism have sensory issues. This means that our children hear, see, smell, taste and feel the world differently than you do. A sound that is pleasant or insignificant to us can be scary or even painful to a child with autism. Light or unexpected touch may startle or frighten a child with autism. Our children react to fear and pain negatively just like any child, but it is much harder for our children to move beyond that fear. Many of our children ave trouble eating the kinds of foods that most children like. Such food can be uncomfortable or even impossible for them to chew and swallow. If you are aware of sensory issues, you can learn how to change your behaviour to help children with autism thrive and be successful.

Autism Affects Communication And Social Skills
It is very hard for our children to express their thoughts and feelings. Often, they cannot find the words to answer questions or express ideas. This does not mean that they do not have opinions or ideas. As parents, we have worked extremely hard to learn our children’s own forms of communication. If you ask, we can usually tell you how our child is feeling or suggest how to help them feel better.

As well, it is very hard for our children to read body language or understand social signals. Gestures and phrases that may be familiar to you can be confusing and pointless to our children. Children with autism should be spoken to gently and directly. They want to know what is happening, just like your children. Even though they may not respond, let them know what is happening, and why.

Tantrums Are A Part Of Autism
If you see a child – no matter what their age – having a major tantrum in public, they could be autistic. Our children deal with extreme stress and frustration, daily. Most of our children are not able to express their tension the same way that your child might. Our children may scream, kick and throw themselves on the ground for reasons you don’t understand. Often we don’t understand either. All we can do is help them through it, and hope that we can calm them enough to continue on with our busy days.

If you see a child having a tantrum in public, please don’t approach the child and try to scold or soothe them. We understand that your intentions are kind, but you will make the situation worse.  An autistic child having a tantrum is not reasonable. They will not be able to talk to you or tell you why they are upset. Chances are, you will frighten them. Some children may even lash out at you. Still, share a kind smile with the child’s mother. She may be as tired and frustrated as her child is.

Autism Affects 1 In 110 Children
That means that you probably know or will meet someone with autism. Twenty years ago autism affected 1 in 10,000 children. The numbers are rising quickly and steadily. There are children with autism in your neighbourhood and your children’s school. More and more young children are being diagnosed with autism. We all need to be aware of the
signs and symptoms. It could be anyone’s child. If you learn the red flags and feel that something may be wrong, please talk to your doctor. If they don’t listen and you still feel that something is wrong, get a second opinion. Many of us had to fight before our child’s symptoms were recognized and their autism was diagnosed.

Early Intervention Is The Key
We have fought to have our children diagnosed because autism requires early treatment. Early intervention is proven to be essential in the treatment of autism. All children with autism need therapies such as occupational therapy, speech therapy, physical therapy and sometimes Applied Behaviour Analysis (ABA). As well, there are bio-medical and naturopathic approaches to treating autism. At this time there is no cure.

And Finally…
Please don’t say you’re sorry when you hear that we have a child who is autistic. We feel blessed, as parents, to have our children. We love them as completely as you love your children. Our children are blessed with amazing gifts and talents. They are very obvious in some of our children, and harder to spot in others, but they are there. You will find them if you make the effort.

John Elder Robison is an adult with Asperger syndrome, an author and board member of Autism Speaks. Be Different, John’s second book which was recently published, dives deeply into the experience of life on the autism spectrum. In this special post, John writes an intriguing essay which explores not only the idea of autistic self-advocacy, but the breadth and depth of what it means to be autistic. 

Self Advocacy

What, exactly, is self-advocacy and what is its place in the autism community?

Autism is a communication disorder, with a broad range of affect. Some people’s autism makes them eccentric and geeky. Other people can’t speak at all, as a result of more severe autistic disability.

Therefore, in the world of autism, some of the population is capable of what some call self-advocacy while another part is not. It should come as no surprise that those groups would have very different wants and needs. That disunity of need and purpose is a fundamental issue we must address.

At its heart, self-advocacy is nothing more than speaking up to get what you want. Everyone who communicates does this, all the time. We self-advocate when we ask for different courses in college. We self advocate when we ask for a chair with a lumbar support at work. Can you recall the last time someone looked at you and said, Speak up! That’s a request for self-advocacy. Learning to communicate effectively enough to get your needs met is an essential part of growing up and making one’s way in the world.

If you’re autistic, your needs are mostly the same as anyone else (food, shelter, security) but you may have some unique twists. For example, you may have allergies, or be sensitive to the flicker of fluorescent lights, or be unable to wear wool clothes because the feel of the fibers drives you crazy.

You may believe your own communication problems will be reduced if the people around you are willing to change their style of engagement to accommodate you, or you may ask that they excuse some of your expressions, which might otherwise be offensive or unacceptable.

Those are all examples of what we call self-advocacy, because the speaker is asking for what he thinks he needs to be successful. I don’t have any issue with anyone who does that. Everyone should seek what they need.

We all engage in this behaviour. Knowing that, I’m not sure why it’s singled out in autistic people by using the term self-advocacy. That makes an ordinary behaviour sound like something unique to certain autistic folks when in fact it’s what anyone who wants to get ahead does. Speaking up to get your needs met is a more accurate and less clinical term for 99% of what we call self-advocacy.

I believe we unwittingly do our more disabled autistic population a disservice by aggrandizing this behaviour by calling it self-advocacy. The clinical term makes it sound like something unique, which it isn’t. Non-autistic people see the accommodations the autistic self-advocates ask for, and jump to the conclusion that those accommodations must be typical of what’s needed for all autistic people.

Unfortunately, nothing could be farther from the truth.

When a teenager with Asperger’s says, “I don’t want to be changed. I want people to accept me as I am,” he is expressing a sentiment shared by every other human. The difference is, the teen with Asperger’s may have Asperger-driven behavioural issues which make that dream much harder for him to attain.

When that same person says, “I want help learning to get along with people,” the lay person hears that and thinks that’s what all autistic people need – help making friends. If only it were that easy.

To make a broad generalization, one might say the articulate and verbal autistic population wants help with social problems, finding and keeping jobs, and support fitting into the community. The non-verbal or partly verbal autistic population is in a very different fix. None of the aforementioned accommodations are of much value at all to them. They need help mastering the basic skills of life and therapy to help them communicate on a much more fundamental level. Many people with more severe autism also have other significant medical challenges. Their needs are totally different.

Yet they cannot self-advocate. Their communication challenges are too big. At the same time, the public is constantly hearing from a verbal autistic population whose wants and needs are totally different, and they are increasingly strident in their demands.

So what should we do? I would never suggest a verbal autistic person keep quiet simply because his needs differ from another autistic person who can’t talk at all. Yet I recognize the problems that speaking out may cause for another part of our community.

I have been guilty of this myself. In my earlier writing, I’ve said, “I don’t need a cure. I just need understanding.” I still believe that’s true for me, but I now recognize the tremendous breadth of the autism spectrum. As a result, I am now sensitive to and accepting of the views of others who do want to be “cured,” however that may be defined. My views about the “cure” may differ from yours but I recognize, accept and respect differing points of view, as long as they are not harmful or destructive to others.

As a community, I think we owe it to our less vocal members to make the lay public aware of the breadth and depth of our needs. There is a huge difference between a job skills coaching group and an ABA behaviour program, but both are vital to their respective constituencies. When we speak to audiences, whether in person or through the media, we should be particularly sensitive to this issue.

Purchase John’s new book, Be Different, at indigo.ca.

This is a special post by Julie, mother of a boy with autism. In February, Julie and her husband launched a website, Learning to Have Hope, to help parents with autisic children in the London area connect with one another.

My personal philosophy on autism is that it is a lot like having diabetes, it is something that you live with, there isn’t a time that you weren’t diabetic but it is manageable and you can sometimes even live without symptoms. Autism is similar; there are some kids that will do excellent with treatment and others that may always appear autistic.

For my son, so far he is in the severe part of the spectrum (that is what his assessment told us), when we found out, he was non-verbal, rarely if ever made eye contact, ignored us when we asked something, and he would yell a lot in frustration. Now after 2 1/2 years, we have tried a casein (dairy) free diet, speech therapy, part time daycare, occupational therapy, behavioral therapy and has been in an IBI program for a year; he is now verbal, able to share his wants and needs and has even become conversational. He participates in classroom style therapy twice a week, which includes following directions, and even plays with other kids sometimes, mostly side-by-side play. This year he has learned to dress and feed himself and be independent on the potty, all things that a year ago did not seem possible in this short of time. I know that I am lucky with how much progress he has made in such a short time as not all kids do.

Here’s how our autism journey started; In January 2008 my family took our first real over night vacation, my husband, our 19-month-old son and myself set out to go to Niagara Falls. We had planned to do all the family fun stuff, go to Rainforest cafe to eat, the Butterfly conservatory, and Bird Kingdom. We did do all these things and had a very good time, the part of the trip that sparked this little thought, this little worry was our little boy decided that running back and forth along the edge of the bed in the hotel was the source of 30 minutes of fun. Now just running back and forth in a cooped up hotel doesn’t seem like such a bad thing. But with his face an inch away from the bed, and us having a hard time distracting him from it, we looked at each other and thought that was kinda weird.

Neither of us really discussed it or said anything about it, but secretly we were both wondering what it was. We also noticed that he wasn’t talking. He had had a normal amount of words for a child his age, then around Christmas he got quiet. We were unsure of what was going on and thought maybe it was just a phase he would grow out of.

About a month later my husband said something to me about autism, and I very confidently reassured him that nothing was wrong. Inside my fear grew; I didn’t want HIM to worry. I did know a little bit about autism; I have an aunt that worked with an autistic child, so I had seen some things, but nothing that our son was doing. But could it be…

In May this aunt came with her family for a visit. So I nonchalantly asked her to reassure my husband that he was fine. After spending the day together she said, “get him into daycare, he might just need to be around more kids”. A warm August day brought my aunt and her family for another visit; we had a great time and shared lots of laughs.

The next day the phone rang it was my aunt. I can’t recall now if she was upset, but she told me that she had some concerns about our son and to get him to a pediatrician. A million things shot through my mind and fear gripped my heart, and I had to ask; what do you think it is? She really didn’t want to tell me what she thought (cause what if she was wrong) but she did say that it might be autism or PDD. I broke down and cried, and of course she felt horrible to tell me. But that was the BEST thing a person could have ever told me. I am grateful everyday that she was strong enough to tell me her thoughts. Really she was just confirming what we have suspected, and 5 minutes later I called her back and said. OK what do I do next!

The most important thing that I have learned through this experience is that; you will never know if you don’t ask, no one can fix it for you; you have to try what you think is best, and that you are your child’s voice and you know best for your child. There are many great services out there to help you with dealing with the diagnosis, whether it is in a support group, service coordinators, and most importantly other parents. I have found much comfort in talking to other parents and reading books about other families and their stories with autism. It is so important to know that you are not alone in this world.