Parental Social Isolation and Autism
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
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:
• Loss of self
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.”