Isolation: A Journey Through Autism

We started off this summer with very high hopes and a fresh outlook on life. My friend of over 12 years was moving out to Colorado from California to help us with starting our self-sustaining farm. For the past 8 years or so, we have been dreaming of getting this started, but we have been either too busy supporting the family financially or with taking care of the kid’s needs. To do both of these we needed to be living (at the least) 100 miles away from our property. So when my friend said she would come out, live on the property and get the work started, I thought this was an ideal opportunity, and funny enough, a chance for a less isolated life.

Sad red-haired girl at grass.

Things often don’t go as smoothly as you would expect, however.

It proved too much for her and her family to live on a piece of land (in the middle of nowhere) that had been all but forgotten for the last 5 years and she decided to stay in my home with her two grown kids and five large dogs. I was foolishly ok with this. I mean, how much chaos could this cause in my home? The home in which I live with my two Autistic children and my husband. Oh did I mention we live in a two bedroom home?

Let’s just say, this was doomed from the beginning. 

I think that even if my kids were neuro-typical, it was only a matter of time before there would be some sort of explosion after which everyone would kiss and make up. The only difference is that I am an ASD Mom. You seriously don’t mess with ASD Moms, especially a seasoned ASD Mom.

My kids were both diagnosed at age three, and are now ten and nine. I have many battle wounds and other various bits of shrap metal under my skin. I’ve had family members and other NT mom’s try to tell me how to better parent my kids. I’ve had doctors, people shopping at the market and bus drivers suggest to me that if my kids can’t behave in public like “normal” kids, I should keep them at home. I’ve had every decision I’ve ever made scrutinized by every kind of person imaginable

All I can say is … I AM DONE!

I am done trying to justify why I choose what I choose. I have imagined every other possible alternative to all of our issues and have made my choices accordingly. Yes my stress is still there. Yes I sometimes take an easy way out of a challenging situation, and in doing so I always feel doubt that I’ve made the right decision. But these decisions are mine to make, no one else’s. I know better than anyone where our breaking point is located.

So when my choices were scrutinized and seemingly attacked on the day in question, I had no problem letting go of the friendship. I didn’t even have the energy to fight to keep the relationship. This was just one battle not worth fighting as far as I was concerned, and my family came first, not my own need to be understood.

They say that parents of special needs kids possess a lot of the same symptoms as those with PTSD. I can really understand why. When a veteran comes home from battle, he often feels like no one truly understands what he is going through, and that’s how parent’s of children with Autism feel too. Sufferers of PTSD feel isolated from their friends and family because they know that no matter what they say or do, these people cannot imagine what they are living through. Their friends and families cannot conceive the fact that what their loved one has experienced, has changed them forever.

So now I ask this community a favor. I know some of you have your own networks and blogs. If y’all would indulge me and share this post on your own pages, I’d be very appreciative. I would like to do an informal survey as to just how prominent the feeling of isolation is to Parents of children with ASD or Aspergers.

So the questions are:

  1. Do you feel isolated from friends and family and/or have you lost touch with the same since the dx?
  2. Do you avoid answering questions from family and friends because you feel they won’t understand your point of view?
  3. Do you go out into the community and if/when you do, do you take kids or take turns with your spouse? Do you even have the option of taking turns with your spouse? (In some cases the spouse’s lack of cooperation is contributing to your stress and isolation)
  4. When was the last time you spent quality time with your spouse OUT ALONE?
  5. When was the last time you spent time alone? (either out in the community or at home)

In some cases, one of the contributing factors to the parent’s symptoms of PTSD is the feeling of being held hostage by ASD and the challenges that it brings to the family dynamics. Now don’t get me wrong. I am in no way saying you are suffering at the hands of your children or spouse, but by the emotional challenges that come with ASD.

So, you may ask, how do we remedy this for ourselves?

It has been my experience (and I only recently discovered this myself) that finding a support system that truly “Gets It” is the best medicine. Some of you already know that there is a slew of bloggers and followers that commiserate together as a community online. Others prefer meeting ASD parents in person. So join or start your own meet-up groups or community support groups. Whatever is your cup of tea, I suggest you go ahead and jump right in. The water is more than accepting.

By Katherine Goodsell M.ED

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Katherine Goodsell M.ED is the mother of two amazing children on the Autism Spectrum. Her children were the catalyst that started her journey down the road of Early Child Development and Education, Developmental Disabilities and Autism Spectrum Disorders Advocacy.In a 25 year span, Katherine is proven as an effective and culturally sensitive Life Coach; a capable director of resources and designer of Behavior plans and individualized educational plans (IEP) for children with developmental delays.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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4 thoughts on “Isolation: A Journey Through Autism

  1. Howdy! I’m at work browsing your blog from my new iphone!
    Just wanted to say I love reading your blog and look forward to all your
    posts! Carry on the excellent work!

  2. I could not have read this at a better time. I’ve known my son has been different since about 5 months of age. He is now 27 months. I voiced a few of my concerns to his pediatrician when he was 22 months. We start our 2nd week of speech therapy & OT this week. They do not diagnosis on their end. He will see a behavioral and/or pediatric psychologist in the near future for a definitive diagnosis. As you & many other moms out there know, you just feel it in your heart/gut what it probably is. I believe in my heart (my achy, hurting heart yet with so much love & proactivity I can offer) that he is autistic. ASD. I want to find a support group bc I am so overwhelmed & isolated (almost for 2 years now). Thanks for sharing your story.