Isolation is a word that families with autism are familiar with.
We have lived in semi isolation for the past two decades. Our four boys were severely autistic when they were small, non verbal with behaviours that didn’t fit with the rest of society. Plus, they were runners, they literally ran from us without looking back so going outdoors with them was always a challenge.
Sometimes they were kindly included in school birthday party invitations. They were very rarely invited for playdates I could count those times on one hand. We could not attend any type of party with other families easily as we would spend the whole time chasing after our boys and keeping them and others safe while people chatted together and their children played games with each other. We became used to making our own entertainment.
Over the years, it didn’t really change. We became our own unit, aided by the fact that we had four boys so they never felt entirely isolated. We Ziegels are a crowd on our own. We make our own fun as a family.
Very often we had to turn down invitations to social occasions as it’s hard finding a babysitter for four autistic children. That has excluded us from much of the adult social life that others take for granted.
It means we have not missed those parties and get togethers that others in lockdown have been missing as we have been missing them in theory for all our lives as parents. We have not missed much socially over the past 100 days as we don’t have that close knit family and friends circle that others have. I’m not complaining. I would happily choose my boys anytime over cocktail parties. I’m just stating facts.
We have remained isolated as we always are, lurking on the periphery of what appears to be normal life, watching and sometimes dipping a toe in the water.
The other side of isolation is being totally alone.
I have been at home since my boys were born. I ran home based ABA (applied behaviour analysis) programmes for them all for over sixteen years and while part of the time they were at primary school, they were also home for a great deal of time. They had no weekend activities except the ones we did with them. I was hardly ever alone, there was always someone in the house.
Again, I would not change anything. It was utterly the right way for us and for them and we are reaping the benefits now. They are independent in self caring skills. They are verbal. They are following mainstream education now with support, studying the subjects they are talented in and achieving so much. They have full and happy lives.
Finally, a few years ago, all four were in full time educational placements. I experienced precious time alone on my own. If that is the true meaning of isolation, then I need it and I crave it now that it’s no longer possible.
Isolation for the past 100 days has meant no isolation for me. Jonathan managed to take one day off and we walked together for a few hours, without the boys. He is a key worker and really busy working from home. The noise he makes talking to colleagues adds to Marcus’ online lessons chatter, Thomas’ fitness sessions banter, Benjamin’s singing and Hector’s shouting at online gaming battles. I attempt to hide but it doesn’t work. There is always a request from someone for my time. I am never truly alone.
I am looking forward to a time when I will be able to isolate again.