WHY LOCKDOWN HAS BEEN ESPECIALLY HARD FOR THOSE ON SPECTRUM AND WHY COMING OUT OF IT MAY ALSO NOT BE EASY

It is a year now since we first went into lockdown and though we have had short periods out of it, for many of us it seems like it has been one long year without any semblance of normality. For many this has been true, due to shielding, not seeing family, not being able to be with loved ones in hospital or visit elderly parents in residential care.

For those on autistic spectrum and remember it is a very wide spectrum, when you have met one person with autism, you have met one person with autism so not everyone on it will react in the same way. In his book “The Autism Discussion Page on the Core Challenges of Autism” A toolbox for helping children with autism feel safe, accepted and competent he states that it is due to the rigid, inflexible way of thinking that make people on spectrum sometimes unable to accept change

His examples of Rigid, Inflexible Thinking are listed below

  • Autism thinking is very concrete, literal and absolute.
  • Rules, regulations, and expectations are black and white, and right or wrong, with little room for interpretation.
  • Variability creates insecurity and anxiety
  • Child may hold on to rigid beliefs and expectations, and melt down if things are not going as expected.
  • Child feels safer with concrete, predictable rules and laws that remain constant

So we can see from the above why many found it difficult and the fact that rules kept changing week by week left many feeling anxious.

I write now from purely a personal point of view although some have written about it prior to me. My daughter on spectrum is twenty, not your average twenty year old and she has stated recently that she only feels age fifteen. The start of lockdown did not have a huge impact on her, as classes moved to Zoom she got used to that (although stays on mute and does not turn camera on). Kirsty never wanted to go out and only one friend who she saw about once a month. Although she would not normally want to go out, she became worse and would not move over the door as she was terrified she would catch it and pass it on to me as I do have underlying health conditions. In her own way, she was like any other teenager in that she spent a lot of time in her room playing minecraft with virtual friends. She would join us at table for mealtimes, then disappear almost immediately. We tried to engage her in conversation, watch movies that we thought she would like, all to no avail. She would try to escape from us, mainly because we would try to engage her in conversation. Therefore I was unprepared for the changes that took place in January and to me it looked like she was regressing. I have looked up this term in articles about autism and it seems to only cover children who have lost abilities they first had, for instance losing ability to speak and it was mostly used for young children. However I kept looking and yes can happen at any time.

From January, Kirsty started coming into our bed at night, saying that she didn’t want to be alone and I have spent quite a few nights sleeping with her. She now sits down with us every night (which certainly curtails what we can watch), I am not complaining but this is so out of character it seems she cannot get close enough. She hates coming to my office but now will come rather than stay home alone. It is very like having a small child again, who you cannot leave and who you must stay with until they go to sleep. She despises shopping but will now do weekly shop with us. I had been trying to work out why this started, and feel it may have been Christmas, as usually a big Christmas dinner with relatives but this year we all stayed at our own homes due to Covid. I think this may have been the first time Covid had actually had an impact on her life. She became increasingly anxious and started having panic attacks. I did download Calm app which she still listens to but in the end I did have to take her to our GP who was marvelous with her. It turned out she needed Folic Acid as her blood was deficient in iron, but she refused to take them until she had spoken to GP again and before next visit she had written down how she was feeling as this is often how she communicates with us, when she cannot find the right words. Again the Doctor was fantastic with her in explaining why she needed medication to help her anxiety and praised her for writing her feelings down. So when rules change again I think we need to be prepared.

The best thing we can do for our children is to be consistent, remember they only see things in black and white a lot of the time. Also when lockdown over do not give them a variety of options of what they can do or you want to do. This causes great anxiety, to be given a choice, something the rest of us relish but for our children on spectrum not so much. Spontaneity goes out the window for us parents of children on spectrum, I have to give three days notice to tell my daughter we are going shopping. If you spring something on her, you only have to look in her eyes to see that she does not want to do it, how dare you just announce that you are going out somewhere and I have to go.

I have to praise the book mentioned above, it is very easy to read, we do have i

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