So you’ve come to terms with your child’s autism…but your family and friends, not so much

23 Sep

I sought out information in a healthy way when The Princess was diagnosed. I contacted a local group and was guided to reputable (read: not anecdotal only) sources. I was introduced to parents with children around The Princess’s age and a bit older. I met respected educators and doctors in my area who guided me kindly. Overall, the upheaval that a diagnosis of a child on the autism spectrum was very short-lived for me. But for some friends and family members (and I’m including in-laws in family members) there are still, to this day confusions, misconceptions and even anger.

For each individual parent, it will take a different amount of time to adjust and feel “to terms” or “comfortable” with a diagnosis. But when you have and friends and family who are not as comfortable or still not accepting…it can make life, well…interesting.

Honestly the last thing you have time for is to help others become better educated and adjusted to this new situation, but with family, especially, it will help to put some kind of effort in. So what can you do?

1. Be open and honest–share good as well as not so good. If you have a new therapist let the family know. Keep them updated on progress or new things you are trying. Don’t rose-color things, if there is a bad day, be honest. Just by your sharing, they won’t feel so out of the loop and will slowly begin to learn things that make them more comfortable.

2. Offer to have them attend therapy sessions or doctor appointments with you—make sure it is okay with the therapist and/or doctor first, but it is very helpful as it gives them a chance to ask their questions and see what is involved.

3. Look into support groups–while a lot of support groups are geared to parents or siblings, many are now appearing for grandparents and extended family members. Knowing that there are other families out there going through the same thing is extremely helpful to extended family members, especially if they do not have much exposure to autism.

4. Do what I did and buy everyone a copy of Ellen Notbohm’s Ten Things Every Child With Autism Wishes You Knew.– Notbohm’s book is written using not much medical jargon and she defines quite a few things in it. She also is not preachy but informative. She gives very clear examples as well. This book turned so much of our family around in their thinking of The Princess. She was no longer broken and needing to be “fixed.” She was also no longer diseased and needing to be “cured.”

5. Discourage the use of Google– while I personally love Google, there are somethings it is NOT good for. One of those is finding out about any kind of illness or condition is NOT one of them. It is incredibly difficult to decipher what one parent did for one child vs what is actually a promising therapy and well-meaning family will begin overloading your inbox with “advice” they have gleaned from every website that they hit. We had two family members try to insist we have an MRI done on The Princess. She was two at the time and they had read on a website that MRIs should be done on all children with autism. What the did not read was that these children it was being recommended for had other conditions as well. And I had to calmly, but firmly tell them that when a medical professional or someone else who was an expert in autism recommended an MRI, then I would consent to having The Princess sedated and go through the process. Similarly another family member began cutting out every newspaper and magazine article she could find about autism and mailing them to us. 90% of it went into the trash as it was things like letters to the editor. Try to be patient with these family members who are struggling for a way to help and just be kind but firm. Eventually, as their comfort level grows, they will be less pushy with this type of information.

Anyone with other tips please leave them in the comments here…we can all use all the help we can get!

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