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Friday, June 24, 2011

Blessed (and Stressed) by Autism

In recent years a nephew and a niece have each had a child with some form of autism, and close friends of ours have had a grandchild diagnosed with the disorder. In the latter case, his mother started a blog called “rainmom” on which she posted everyday episodes of her son’s problem behaviors and his difficulties with impulse control.

None of these three children have full-blown autism, as in the inability to speak or to show any kind of affection, and “rainmom’s” son exhibited some unusual abilities early on. For example, by age four he could name each of the American presidents and their wives.

His father recently wrote the following on his own blog: “When we first considered the possibility that our son might be autistic it mostly seemed like good news. We already knew that his speech was delayed, and that he seemed largely oblivious to other humans much of the time. We already knew he was beautiful and charming and that we loved him. So, at first the diagnosis ... seemed to promise answers to the questions that were bothering us, like Why? and What should we do? However, as we read more and more about autism, a dreadful prospect emerged, that his socially awkward behavior may never change...”

He offered the following suggestions for how others can be supportive:


Offer to help.

Be patient if you are told that the help you are offering is not wanted, and keep trying.

Read up on autism.
Interact with my child.  But do not expect (and certainly don't demand) that he will interact with you.

Tell me that you have noticed actual, observable progress my child has made (But don’t make stuff up).

Tell me that you like my child.

Tell me about resources for the parents of autistic children you’ve heard about.  But don't go on and on about them and don't get offended if I don't avail myself of them.
Offers of babysitting and suggestions of resources are always welcome. 



Then he added some don'ts:


Don’t tell me that my child seems "normal" to you. 

Don’t go on and on and on about every new diet, therapy, potential cause or miracle cure you’ve heard about.

Don’t assume that the things you do that endear other children to you will endear you to my child.

And don’t assume that because you know another autistic child well, that you know my autistic child in the slightest.



Our niece experienced some great examples of helpful things their church did for them. One member frequently spent time with their son during church services to give the parents a break. The pastoral team met with a consultant to learn more about autism and how the church could be more supportive. A flyer with their son's picture and some of his strengths, challenges and positive ways to interact with him was prepared for everyone in the congregation. It explained, for example, that his unusual noises in church were not intentional. The church also encouraged them to share with friends and with others in their cell group their sense of the "continual loss"  autism brings to a family. 



The nephew who’s the parent of an autistic child, shared the following with me in a recent email:

"Parents of recently diagnosed children should talk to other parents of autistic children about it. I had a colleague at work whose daughter was diagnosed the year before. It was very helpful to hear her perspective when I was distraught. 'It gets better,' she told me and she was right. I held on to this and to know someone else similar to me was going through the same things was immensely helpful. Find someone online, there are many support groups, ASA, etc., that can help you just when you need to talk and also to help you find resources. You will be amazed just how many people are around you are affected by autism and it can give you strength to hear their stories.

"In getting help for your child do not wait and do not be afraid to be pushy. My wife and I learned very early on that you have to be persistent and doggedly pursue services and programs for our son. Sometimes you have to be the squeaky wheel.

“And be careful about giving advice on discipline or parenting issues. Comments like ‘You just need to set some limits and be consistent!’ can be well intentioned, but to a parent can be interpreted as it being your fault.

"

Hearing all this reminded me that it really does take a whole village, or a whole congregation, to raise a child. And this is especially true in the case of one with special needs.

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