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Wednesday, June 1, 2011

Family .... for better or worse

My oldest son got married last week, and I find my mind constantly circling back to the topic of family. Complicated, wonderful, infuriating, steadfast - they are the ones who can get under your skin faster than anyone, they know all your buttons and might not be shy about pushing them - they are also the ones who are bound to you, for better or worse, through all the ups and downs that life brings.

There's nothing like the news of a serious diagnosis like autism to bring out all of the best and worst of family dynamics. It can be surprising (and perhaps disillusioning) who stands fast and who runs for the hills. But there are also unexpected twists in who can come back after a disappointing start - life is long, and people may need second (and third and fourth) chances to show that they can be there for you.

Take a look at this picture, drawn by Kevin, a young man with autism:

It's a picture of him with his older brother Raymond, playing in the pool (Kevin is drawn in orange, Raymond in green - Kevin has chosen a unique colour for each important person in his life). I have known both Kevin and Raymond since they were young boys, and have had the privilege of seeing them grow up and watching their bond as brothers deepen as the years have gone by. Kevin is a complicated person - intelligent, severely compromised in conventional communication, with multiple medical/allergy issues that have caused many crises over time. Raymond is an intelligent guy with a great sense of humour, and an ability to roll with the unpredictable highs and lows of daily life in an ASD household. His love for his brother is obvious in all that he does, and Kevin adores him. In our language work, the main characters are always Kevin and Raymond (and Mr. Bean and Teddy) and mom and dad. Wonderful pictures of the whole family adventuring, vacationing, relaxing and playing - this is Kevin's world, and this is what holds him together during difficult times when his own mind and body conspire against him to make life unmanageable.

If there is one factor that I have found to be predictive of long-term success, it's family support. From the point of view of a therapist/interventionist, anything that strengthens the family unit is a good thing, and anything that weakens or destabilizes the family is not. The period of time that includes diagnosis and early intervention can be panic-filled and mind-numbing. If the diagnosis of ASD is correct (and there are other diagnoses that can look like ASD in young children, but turn out to be a different type of communication or developmental difference), then it's a distance run, not a sprint. You will do what you can in the years before age 5, and then you will do what's needed in the school years, and then you will do what's next in the adult years - autism is a basic difference in the way that a person's mind works, and that difference requires specialized teaching over the person's lifetime.

In the rush and panic that often surrounds early intervention, family relationships can inadvertently be left in the dust. This is not okay - if it's happening in your family, now would be the time to turn it around. What can you do? From my experience over years of working closely with multiple families with ASD, I would recommend these things:

Spend time with your spouse: Talk your way through the issues and come to a consensus on how you as a family are going to deal with the situation, lean on other family members to give you time with each other away from the stresses of daily life with young autism, invest money in a quality couples therapist to help you mediate your discussions and come up with workable solutions.

Spend time with your other children: This is a frightening time for them, where mom and dad are stressed and distressed, and daily crises with the young ASD child can easily push their needs and concerns to the sidelines. That would be one thing if you were dealing with an illness that was a week or month in duration, but it's not a productive strategy for the long term. The siblings of a person with autism are the next generation of "family", and can be the best long-term support for their brother/sister - they need your time, and you need your time with them. "Sibling groups" can give your kids a place to talk about issues with other kids who are dealing with similar issues in their lives.

Resist the temptation to break the family bank: You will need all of your resources, including financial, to deal with a long-term difference in your family life. Call on support from your larger family, tell them what you need, give them a chance to step up to the plate. The extra stress caused by unmanageable debt can be the breaking point for a family, and the family is one resource that the person with ASD can't do without.

Choose your therapists and educators carefully: A good therapist will be respectful of your family and your child, and will offer you advice that takes into account the particular profile of who you are as a unit. A good "litmus test" for advice is whether it builds you up as a family or breaks you down. The best intervention is tailored to the unique constellation of a family, it builds on the strengths and minimizes the weak points - one size does not fit all.

Family ... the most precious resource that we too often take for granted ... they weave around us, they hold us up, they drive us crazy, they're in it for the long haul ... a toast to all of us, and we'll last another day!

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