Parental Social Isolation and Autism

Jun 9 2014 - 8:15pm
Autism and Parental Isolation
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A common problem amid the parents that are raising autistic children is social isolation. Whether it be our friends leaving us after our child’s diagnosis or us personally isolating ourselves in order to simply cope with our child’s disorder. Parents are inclined to forget how important it is to be social, to interact with our peers. It seems that our own needs and emotions are often put on the back burner in order to accommodate our family’s needs. It also becomes progressively harder to maintain a friendship, even with those friends you thought would always be there.

The Friendship Effect
When your child is diagnosed with autism you lose friends. It is an extremely hard reality to deny and an even harder situation to understand how you play a role in. Some parents feel like their friends just left them, and in some cases perhaps they did. However, in a large number of cases, a big part of it is that you grew apart. Face it, your life is completely different now. You think about CBT appointments, ABA therapy, meltdowns, stimming, paraprofessionals, PECS cards, and hoping you will be blessed with more than 2 hours sleep. Your friends, generally, have no inkling of what any of that means or what it’s like to be excited over sleeping 4 hours. You just don’t understand each other’s’ lives anymore.

As the days go by I bet you notice/noticed how much it gets under your skin when a friend talks about how smart their child is, how easily things come to them. After a while you tend to not want to be around the person. Or those moments when a friend rudely asks what is wrong with your child. Whether they meant to come off offensive or not doesn’t lessen how it ultimately made you feel. Inevitably you are going to start isolating yourself, especially in the first several years. It’s hard to talk about your child’s disorder with friends/family because, more than likely, the simplest thought of your child’s autism brings you to tears. Given this how are you supposed to help a friend understand? In turn your friends are going to start distancing themselves because they do not “get it”. There are those cases where the friend is tremendously ignorant and they distance themselves simply because they don’t want to be around your child or whatever other reason they may have. Try not to take it personally. Ignorance is everywhere, you can’t educate the whole wide world-all you can do as a parent is try to help your little corner of it.

Parents also isolate themselves from their family, especially when their child is first diagnosed. It is a well-known and talked about fact within the autism community that family members sometimes say the meanest things, meaner than the general public dare say. The things that just make you want to scream. Things that if said by a stranger would no doubt lead to a stern educating.

The worst part is that much of the time they act as though they have no clue they are being offensive. It becomes easier to stay away than to listen things such as, “You know if I was his parent he’d sure be different than he is!” Indubitably you’ll want to retort, “No, Aunt Sue, if you were his mother you would certainly be different.” However you wouldn’t say this in most cases. This issue has become so common that there is now a syndrome named for it. It’s called Autism Isolation Syndrome.

Autism Isolation Syndrome
Autism Isolation Syndrome, in a nut shell, is the way a parent/family copes with the stresses that are concomitant with raising an autistic child; whether emotional, physical, financial, or social. In some instances the parent(s) isolate themselves from situations and from people. The three defined constituents are:

• Social isolation
• Emotional isolation
• Physical isolation

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There are several emotions that contribute to isolation. These emotions can be extraordinarily deep in the beginning. The emotions that are most often identified with parental isolation are:

• Guilt
• Shame
• Denial
• Loss of self
• Grief
• Sadness
• Exhaustion

According to an article by Rebecca Sperber, M.S., MFT there are 3 stages to Autism Isolation Syndrome.

• Stage 1: Isolation within your family
• Stage 2: Physical Isolation
• Stage 3: Social Isolation

Stage 1 deals with not communicating/venting your negative emotions with family members. The truth of it is that it simply grows to be too arduous to allow yourself to understand your emotions anymore.

The 2nd and 3rd Stages dig into topics such as losing yourself in your child’s isolation and consequently not allowing a lot of physical contact yourself. It becomes easier to be numb. Also touching on the fact that our families are not like other families and how that leads to fears associated with being in public with our child. As Ms. Sperber put it, “Isolation provides its own form of comfort, but not without profound loss.”

In Closing
There is no “magic bullet” to cure the isolation we parents feel, just like there is no “magic bullet” to cure our children’s autism. While not all of the isolation is directly caused by us, some of it is. The first step in mending the problem is certainly recognizing that you contribute to it. Reach out for support, meet other parents, and surround yourself with people that “get it”. It’s time to start healing the wounds that began forming after your child was diagnosed.

Reference: AutismToday.com: Autism Isolation Syndrome

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Comments

My son and and family are very isolated we live in Glasgow and don't get any support.
I think our experiences are valuable, no matter how we pave them. When my son was diagnosed I became a single parent, the school system excluded us & my family/friends told me to have a nice life... we were utterly alone. Although we have been isolated from many 'normalities'... personal growth is most definately not one of them. Isolation has in fact been the catalyst that brought my kids and I together to form the courage we have needed, & I expect will continue to need, to find appreciation in every aspect of our lives. Although our journey is not for the faint hearted, our hearts are fulfilled. And is that not what life is really about?
Thank you. It is a relief to know I'm not the only special needs parent who feels this way.
I think a lot of the isolation is the fact that parents of school age children gravitate towards other parents with whom kids their kids get along with. people are also wrapped up in sports most of the weekend and if you aren't one of them, you are out of luck. No one is purposefully isolating anyone, it just happens because that's the structure of our society these days.
So. Much has happened maybe this put me in the situation where I divorced my husband and my job advocating for parents and my students at least 3 of my students commit suicide from being bullied 24-7 I became a witness for State, Whistleblower The school department eventually got rid of me. They went after my son with autism. I am still fight litigation maybe Someone out there. Can. HELP,
The Kenosha Unified School District staff in Wisconson does NOT know what Autism is at all. They think it is mental retardation and mental illness. All students are put in the lowest level classrooms that look like storage areas and taught pre-school material!
I FEEL MY CHILDREN ARE ISOLATING ME BECAUSE I WORK HARD IM A CARETAKER THERE NOT MY X IS THERE CARE TAKER THEY DO NOT PROVIDE ANYTHING YO THE THE HOUSE I ASHAMED I FEEL I FAILED AS A PARENT TO BE ABLE TO MAKE THEM SELF SUFFICIENT I NECER SEE MY KIDS THERE ARE ALWAYS SOMEWHERE ELSE I NEVER SEE THEM ITS BEEN MORE THAN A YEAR I DO NOTHING BUT ONLY GIVE IM GOING TO LET GO MY HEART HURTS I SPEND 24 YEARS TAKING CARE OF MY KIDS I HAVE NOTHING TO SHOW FOR IT ITS LIKE I WASTEWD MYTIME