Social Isolation of the Autism Family

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I would open the mail with a smile on my face, and then it would sink.

The dreaded invitation.

Isn’t that awful?  That I would look at an invitation and get upset?

Invitations lost their luster.

We had become a socially isolative family.

It happened quite normally, I must say.  Taking Declan out into the community was a struggle when he was younger, no matter where we went.  To the store, to a Dr.’s office, to a playground – anywhere and everywhere we went there was a problem, a meltdown, him running into a dangerous situation, hitting other kids.  I have two older children, and I never faced with them I what I faced with Declan.

So we stopped taking him out for a while.  He was safe at home.  He was happier at home.  We all felt better

The invitations still came then, and we would have a dilemma. 

My husband and I knew it was best to keep him home.  But we would feel obligated.  It was like we were looking at each other over a storm.  My husband felt we had to try to see if we could get through the storm, but I didn’t want to try.

It was an adjustment for us all.  If we went to an event, we couldn’t let Declan play with the other kids.  It was too risky as he hit.  Many times we would look away for a second, Declan would hit and we would watch the parent come scoop up their child and take them away while we apologized.

My husband and I couldn’t talk to the other adults for more than a couple of words.  We were chasing Declan, so focused on him, his safety and the safety of others.  We became party isolative and appeared standoffish.  If a meltdown occurred, my husband and I would fight.  About what was happening, about why it was happening, how could we stop it to make Declan’s screaming stop.

The diagnosis came, and we avoided social situations

I couldn’t talk about it.  I couldn’t say the word “autism” and “Declan” in the same sentence above a whisper for the longest time.  But I saw Declan, and for the first time I started to understand what was happening.

We became more autism aware

We became our own watchdogs, so careful about the situations we put Declan in.  My husband and I were more aware of what would set him off, so we avoided those things.

My husband and I know where our family was not loved and supported as a whole and avoided those surroundings.

It became clear to us those that minimized what Declan was going through and thought my husband and I (and I guess the clinicians and therapists that worked with Declan) were over reacting.    We felt judged.  We heard others tell us how much better they could do, “Sure – leave him with me for a week.”  We became bad parents, a syndrome which only exacerbated when my daughter was diagnosed with High Functioning Autism

Social media friends changed.  Those that I knew forever and reached out to for a quick chat were no longer interested or available.  Maybe they don’t know what to say?  Maybe they don’t know how to deal with “special needs.”

Guess what?  I don’t know either – I am learning as I go.

Still hurts.

We have two older kids that we do not want to keep from typical childhood experiences.  Sports, activities, parties, events.  We want them to experience them all, so they do.  We just do not do them as a family all the time.

The invitations are pretty few now.  When they come my husband and I still look at each other over a storm.  We know right away if we think Declan will do well or have issues, if we are supported or if there is a safety issue.  We still feel stress, we still fight but we are trying more outings.

Of course, always travelling everywhere we go with two cars.  Just in case.

 

photo credit: judy dean N03/29006169086″>Family day out via photopin (license)

14 thoughts on “Social Isolation of the Autism Family

    1. Friends that reach out are trying, and I love that. But I always ask for them to come here. I don’t think they realize the extent “Declan proofing” takes. For a while we had no curtains, no glass picture frames, no knives, no glass drinking glasses – but we had made our house safe(r) for dangers we had witnessed.

    1. Social Isolation hurts – even when we know it is best for the safety of Declan and others. Quite an adjustment.

  1. Raising a special needs child is very stressful but there are support groups out there for the parents get in touch with one they will listen and maybe even help you since members of such groups have similar experience

  2. I did not grow up in a family that had any autism diagnosed, but am pretty sure my little brother has a minor case of it. Spent my years growing up standing up for him to the bigger kids on the bus we rode to school each day. A small little girl (was the oldest child in the family) who now stands a whopping 5 feet 1 inch taking on high school bullies. You learn how to fight dirty to save your little brother’s pride!

    Yeah, people in the church we went to avoided me. Hate that evil place anyway, so didn’t bother me any! All they wanted was our money, not to help other people or I would have been happy to donate more.

    Was on a first name basis with all the school’s administration due to my behavior. I stood up for any disadvantaged child I met throughout my life. Learned how to stay on the right side of the rules by keeping a copy of the rules on hand to defend myself with. You just have to make sure you do not throw the first punch and have plenty of witnesses around to collaborate what actually happened! Was back before everyone had a cell phone to take pictures (was way before they even reached the market place yet). Took some skill to create your own defence, but it was my little brother we are talking about! At least my baby brother was big enough to defend himself.

    My little brother still lives back home with my parents in southern IL. I left home as soon as I graduated from high school. My baby brother joined the U.S. Marines and served them for a single tour. He now lives down in TX.

    Have absolutely no idea how my little brother will survive after my parents pass away. My family for some strange reason is well liked. Think it is because we were the only people that had enough food on our table to feed other people when it was needed. The farm has existed for over 100 years, but looks like this will be the generation for the farm.

  3. I completely understand. We’ve lost friends (one has parts of Asperger’s and both have mood disorders and ADHD) over my “parenting skills”. My husband’s sister told us repeatedly to leave my oldest with her (before my youngest was born) and he would be fine and would have no need for medicine. I got so tired of it, the next time she took him, I sent him over without taking his meds. We never heard those comments again.

  4. Sorry, I sent my reply before finishing. My husband’s parents also would never ask about my oldest’s disability, because they couldn’t accept someone in their family had any problems, but then walked out on me when I was doing what the doctor had suggested to do when he had lost it and couldn’t get control (I was supposed to continually send him back to his room until he was able to listen and have a conversation). This last one happened right after my husband died. It was rough. I’m sorry you’ve had the same experiences. People are not compassionate or caring about anyone that is different than them.

    1. Learning and accepting my kids had special needs was hard. It felt like I was being detached from the world and being put on a separate island of worries and concerns that I was going to have to deal with alone with my husband. When we told others about the diagnoses, I was astounded at some of their reactions. At a time where my husband and I needed hugs and reassurances, some people gave us eye rolls and minimizing comments. I think they needed to adjust to the news too (some never did and disappeared from our world). I found the most help from other special needs families. They really helped pick us up when we were so overwhelmed. I am so thankful I reached out for help and followed the advice of the Dr.’s and therapists because my kids are doing so much better now. I don’t have the answers, but I am always here if you need someone to listen (or read 🙂 )

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