To Support Group or Not to Support Group…

26 Sep

Okay, for full disclosure, I’ve never been a part of a support group for parents of autistic children in any way shape or form. I have found support networks of my own choosing, but I have never joined any type of formal group. This has mostly been due to money (not being able to afford a babysitter) and time (never scheduled when it was convenient for me to attend).

That being said, I think support groups are a wonderful thing…for many people, but not all.

I think that early on in a diagnosis or if someone is in a new area, support groups are a boon to that person of networking, information, and just support: affirmation that we are not alone in what we are going through and there are a lot of normal things about our lives at least to some other people.

And even aside from those situations, support groups can be an excellent outlet for the day-to-day struggles we may have with autism and our children.

I also understand the fear of joining any type of “support group” or network. Some people believe that by joining one or more such organizations they may be “branding” their child (particularly if the child is very young). I actually have heard that from more than one parent. I also know that for many there is a very negative stigma associated with autism and that they are more than willing to help their child in conventional ways but do not want to expose themselves to the “community” at large by joining such a group. I, myself, have social anxiety disorder, so any gathering brings with it some fear. But if you find yourself really struggling, a support group may be exactly what you need.

Now I would be remiss if I didn’t say that yes, there can be some downsides to any type of support group, so I’ll share a few that were anonymously shared with me by other parents who have joined them.

Don’t allow yourself to feel pressured by the therapies, diets, etc that other parents in the group have adopted. Not every therapy or diet or social group is right for your child, just remember that. And if there is something that you simply cannot afford, it is okay too. It is not a competition to see who can get their kids in the most activities, it is about what is best for your child and what you can reasonably provide.

Just because you are asked to join multiple support groups, doesn’t mean you have to join all of them. If you can, try all of them out and find the one that best fits your schedule/lifestyle and that you feel most comfortable with. I have had mothers of children with aspergers tell me there are multiple aspie and autism groups and they feel pressure to join all of them. That’s not necessary, chances are even with entirely different people in different groups, you will get a lot of repetition, so it’s okay to just choose one and stick with it.

If there comes a time when you feel that the benefits of being in the support group are no longer enough to justify you  attending, it is okay to leave. I’ve heard multiple parents say to me that they were begged into staying long past a time they felt they were “getting anything” out of the group. That’s not necessary. You can certainly maintain friendships with people outside of the group setting and that is what email, the phone, and facebook et al are for.

Ultimately it is a very personal decision and not one to enter into lightly. But don’t ever be afraid to seek out people to help you on the way.

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