There's no doubt that autism can be a very isolating disorder. A child with an autism spectrum disorder may make it very tough for families to engage in ordinary activities, from Thanksgiving with the grandparents to soccer with the community. What's more, parents may feel that their friends and family are uncomfortable with their child, critical of their parenting, or deliberately clueless about what it means to raise a child with a developmental challenge.
In theory, autism parents should be able to turn to other autism parents for help, support and understanding. Sometimes, this works out well. Often, though, there are serious splits within the autism parent community itself - and those splits can create an even greater sense of isolation. And, as blog commenter Gretchen notes, "Feeling isolated within an isolated community sort of sucks."
What causes the splits? Sometimes, it's the reality that autism is such a broad ranging diagnosis. It's hard indeed for parents of children with severe intellectual, behavioral and speech issues to connect on a practical level with parents of children with mild or non-existent intellectual, behavioral or speech issues. The fact that all these families have kids with social/communication delays becomes insignificant when one parent is worried about potty training a sixteen-year-old while the other is working on college prep and independent living skills.
Perhaps even more significant are the controversies over treatment. Yes, all parents of kids with autism are looking for effective therapies for their children. But tempers flare when parent X insists ABA is the key to success while parent Y advocates for Floortime and parent Z is certain that only special diets and biomedical intervention can make a significant impact on autistic symptoms.
With autism, the arguments rarely end with a smile and a "well, we all do what we feel is best for our kids." In part this is because each group really, honestly believes that their approach is far more likely to be helpful - and in some cases parents feel that different approaches can actually be hurtful. Few parents feel comfortable saying, in essence, "well, that's great, you should go ahead and provide your child with a treatment that won't make a positive difference and could actually be harmful."
In practice, while parents can work together on specific projects (walks for fundraising, advocating for better adult services, etc.), it's common indeed to feel isolated on a personal level from other autism parents.
Do you feel isolated from other autism parents? How do you cope?
I think what some parents within the autism community forget that each child is an individual. It’s not those ‘different types’ of autism, it’s that autism effects each child differently and every child autism or not progresses at different rates. It’s one thing to share ones experience of what worked for them, but to be persistent that another parent should do what they did does tend to distance parent from parent. You’d think being within the autism community would be less stressful and more accepting, yet for many autism is the bases of the relationship and trying to fix a child instead of just being understanding friends.
I do not find it lonely within the autism community, I just distance myself from those who seems to have all the answers. I’m sure I shared this before about the family I invited to a Halloween party….
They did come but at the party, the mom was all about this powder product and how greatly her child improved (odd, since her child appeared to still have autism). I didn’t need a powder product for my son to improve and I honestly don’t expect an over night amazing cure. I wondered what she seen in my son and how she couldn’t see how hard he worked for where he was today, or if his autism really wasn’t the deal at all but the product was. I didn’t distance myself from this parent; because I wasn’t part of her product there was no room for friendship it seems. Not even to say hi at the bus stop. There was no reason the 2 boys couldn’t be friends outside of school, but between parent to parent, it seemed it had to be based off her product intervention.
I have found many friends who are understanding and accepting, who do not push their idea’s of interventions and where autism isn’t and doesn’t have to be the sole focus of the friendship even though we have kids with autism. There’s a difference between learning together and pushing ones idea’s, and being respectful to your friends. I cant say that I’m lonely. Autism or not, I’d avoid certain types of personalities just the same.
I agree with Gretchen. Feeling isolated for any reason sucks and it seems to me that if there’s one thing that has universally slid in modern society, it’s the concept of human compassion. People in general seem colder and less willing to care about anyone in a personal way.
So, Gretchen, for what it’s worth from a complete stranger, here’s a long distance hug. We’re apart and isolated and struggling… but somehow we will get through all of this together.
I certainly feel isolated from others both within as well outside if the wonderful world of autism. I can’t tell you how many times I’ve heard from from well meaning but totally clueless friends how as long as you catch it early autism isn’t so bad. What?! It seems that is how the interpret the whole early and intensive intervention reco. Somehow equating autism with a cold that can be quashed completely if nipped in the bud with a pill or two. If only it were that easy!
And within the autism crowd I find myself simply unable to connect with anyone whose child is doing significantly better than mine. It seems horrible to admit this but it’s true. I guess it’s a defense mechanism of sorts, but I always end up blaming myself for failing my son after I’ve been around them. Somehow they were able to do for their child what I haven’t been able to do for mine.
I feel isolated because I too have Asperger’s as well as my 8yo son. In some ways its good for my son as I can empathise with him when he is struggling. But I struggle to provide the social contacts for him because I find them so difficult. Not only that, people find it difficult to believe when I am struggling because I mask my difficulties.
Also, occasionally I get the brunt of other parents feelings because how can I compare myself to their child, who has far worse difficulties (I don’t, but because I say “I am on the autistic spectrum too, they assume I do). Argh
Here is an article which is not about loneliness, but it is about bridging the split between the biomedical and self-advocacy communities. Dr. Valerie Paradiz (a parent who is on the spectrum herself) wrote this guest editorial for the Autism Research Review International:
http://www.autism.com/pdf/papers/Edelson_Paradiz.pdf