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The Autism Society promotes the active and informed involvement of family members and the individual with autism in the planning of individualized, appropriate services and supports. The Board of the Autism Society believes that each person with autism is a unique individual. Each family and individual with autism should have the right to learn about and then select, the options that they feel are most appropriate for the individual with autism. To the maximum extent possible, we believe that the decisions should be made by the individual with autism in collaboration with family, guardians and caregivers.
Services should enhance and strengthen natural family and community supports for the individual with autism and the family whenever possible. The service option designed for an individual with autism should result in improved quality of life. Abusive treatment of any kind is not an option.
We firmly believe that no single type of program or service will fill the needs of every individual with autism and that each person should have access to support services. Selection of a program, service or method of treatment should be on the basis of a full assessment of each person's abilities, needs and interests. We believe that services should be outcome based to insure that they meet the individualized needs of a person with autism.
With appropriate education, vocational training and community living options and support systems, individuals with autism can lead dignified, productive lives in their communities and strive to reach their fullest potential.
The Autism Society believes that all individuals with autism have the right to access appropriate services and supports based on their needs and desires.
- Adopted by the Autism Society Board of Directors, 4/1/1995
- Revised by the Autism Society Board of Directors 12/12/2009
By Susan Walton
Some find it can be tricky to know how to act when a friend's child has autism. "It's so hard to know what to say! How can I be a good friend? I seem to say the wrong thing every time!"
And then, some autism moms report a frustrating breakdown in communication, friendships that disintegrate, or wounds that they nurse in silence.
We all need some help because we need these friendships. Here's some advice for everyone who is near and dear to a mom whose children have autism. Consider it a "friend's guide," or, if you take it to heart, the best mother's day gift you can give.
Do NOT offer pity.
Nothing makes a girlfriend want to run off and take a shower (and then stay far, far away from the source of the filth) like genuine, heartfelt pity.
"You poor thing, I feel bad worrying about my (plumbing problems, child's broken wrist, difficulties at work) when I think of you!"
Of course your friend has it rough. But pointing that out and covering her in "You have it so much worse than me" slime only serves to rub it in.
Do NOT attempt to provide inspiration.
Don't tell her about the person you read about in the paper who performs on the piano or the family whose child is "completely recovered." Whether it is savantism or cure (or any other amazing gift of good luck), the reality is that most people with autism will not develop skills that allow them to "triumph" over their challenges, and recovery is as unlikely as lightning. Try to imagine telling your friend whose house just went into foreclosure about the woman in the paper who won the lottery. Would that help?
For every instance of those rare things happening, there is a reporter waiting to rave about it and a further five people sending the article to your friend. You don't need to be one of them. She may be struggling with her child's potty training, sleeping problems, lack of speech, intense unhappiness or daily living skills. Her child might grow up to be challenged to play the radio for an audience without driving them crazy by changing the station every three seconds. Trust me when I say that she will not feel inspired by the teenager with autism who plays concert piano.
Do NOT give advice.
If the parent of a child with autism is in the market for information, there is a great deal to be had. Most of it is garbage. You may read about secretin, chelation, elimination diets, or lyme disease. And there is credible information like new research underway. But assume that your friend has access to the information that you have access to, because she does. Forcing her to express gratitude for the exciting news that a new snake oil has arrived on the scene, or having to debunk it for the benefit of someone who doesn't really need it anyway is trying. Instead, be her respite from that part of her life.
Do (Please, please do) offer kindness and solidarity.
You may not know what this hardship feels like, but presumably you know what some hardship feels like. You want to strike a chord of "I know I can't truly understand this, but I'm behind you all the way. You go, girl!"
DO (Please, please do) listen.
Tune in and find things to ask questions about as if you are paying attention. "Last time we talked you were working really hard on getting insurance to come across. Any luck?"
DO (Please, please do) stay put as a friend.
Maybe your kids don't really like playing with her kids, but you can make them. Really, you can. You can insist. Eventually they will either find that they are enjoying it more than they thought they would, or it will be over. It is good for your kids to learn kindness and patience. It is good for her kids to play with your kids who don't have autism. But only you can make it happen.
DO (Please, please do) be patient.
It is entirely possible that your friendship will seem different, especially during the early years after a diagnosis. Maybe all her new friends have kids with autism and you feel weird, out of place. Maybe she has a tendency to cry over coffee. Work through it. She needs you. And someday, when you need to find a specialist for your child, you will call her first because she is so darn plugged-in to the local medical community and you can trust any recommendation she makes.
Susan Walton is an adventure seeker and the Northern California mom of three children. She is the author of Coloring Outside Autism's Lines, a practical book about ways to have fun at home, with friends, in the community, during holidays and on vacation. It also gives real-world advice to friends and family about being part of the fun. On sale now at Amazon and wherever books are sold. You can follow her on twitter at swalton47.