Monday, April 13, 2020

From An Autistic; How To Navigate Covid19 as Differently Abled Person Or a Caregiver to Neurodiverse People. Navigating Differences During Crisis.


*I have been asked to write a post to help autistics especially deal with this time period at Home while healthy (other subjects are another post) I was also told that Neurotypical people could also benefit from the post...I can only hope this will help. I will be mostly referencing other posts that I feel should be read which are mostly WAY shorter than mine so yay! (I also tried to make mine shorter so you would have time to read the articles.)*



Changes can be especially hard on Autistics and all the people who have differently wired brains from the majority or differently abled bodies. We even struggle with happy changes. So when a societal change happens and it affects all areas of our lives, we are going to probably experience more meltdowns, behavioural issues, anxiety or executive functioning fails. Even if we are benefiting from certain aspects like online shopping or access to free helps we did not have before.

Many people with developmental disabilities won't fully understand the new rules of society. They don't understand why they can't keep their routine or see their usual friends or supports the same way. I feel for those whom may get fined for not social distancing whom can seem "normal" but don't quite understand the meaning of social distancing. These two articles speak upon the disparity that can happen: Independence versus Dependence by Musings of an Aspie CLICK and Decoding the High Functioning label by Musings of An Aspie CLICK. 


The sheer level of ignorance, even in normal "IEP" or specialized educational expectations for those whom are Neurodiverse shows our society's unreasonable expectations. I am worried about parents enforcing these on children in isolation. As this article  ( https://musingsofanaspie.com/2014/11/13/unreasonable-goals/ ) states, I, as a 30 plus adult, can not even meet some elementary school programs expectations. As the author comments, I am not against special programming, or aid, but these need to also be coming from reasonable expectations and with guides from those whose brains actually work differently.

What does this have to do with isolation and covid 19 times?

A lot of disabled adults and children ( autism, down syndrome, learning disabled, differently wired, IQ differences, dyspraxics, handicapped, and multiple others whom are different yet not less) are still being expected to live under unreasonable goals. 'Unreasonable' will be different for each person in terms of needs and require contextual support. An example of this would be of a mother who has a special needs child whom pushes them to accomplish the same as their other children and when it happens they state, "The doctors said it will never happen but look what it she/he  did!" As the child is pictured clearly melting down in the background. Or showing a confused look of pride because they did something that made mommy happy but that they would never choose on their own to do...and their emotions are not considered. The mother pushed, the child performed even if it is a great accomplishment they were not supposed to perform, but inside they feel turmoil that can not be expressed. The injustice they can't give words to. That maybe they did not want to do that, just because they could. Maybe it was not important for them to prove it?

I understand how it is important to push at times, in order to help a child or adult become their best...but then we get into the question, "What is best?" What if your version of physical fitness or learning the list of vocabulary perfectly, or reading at that level, are not in the best interests of the child? What if they do not want to climb that hill? Does that mean they are less motivated or less accomplished? What if they prefer to sit and watch or read? Does that mean that they have less of a life? What if they prefer to run around instead of read? It is important they can learn enough to support their best life and what they can do for basic living, but what then, if they do not want to engage on that level? In this article ,Autistic Soul (CLICK) writes, "Part of my job as the parent of an autistic child is to make his reality as tolerable as possible, and this means showing him how to adapt by working with his sensory issues – like going to the shops when it’s quiet and wearing headphones to block out excess noise. Parents will find that children spend less time in their fantasy worlds when their needs are being met, and this includes their educational needs, but they must be aware that fantasy/escapism may always be an integral part of their child’s life, no matter how old they are. "

That is where covid comes in...these children and adults are still in their homes, abiding by the rules, either by enforcement or coercion or understanding, but they are still differently wired people. They still require different rules within the home, differing perspectives and understanding.  I was shocked that the schools are giving home work worth six hours a day!This would be unreasonable for any home schooler with a few special exceptions. It's not needed yet the schools are asking it. I understand there is a concern children need something to do- but there are MANY ways to have a rich life at home. 

Cynthia deals with an aspect of this on a post on sensory sensitivities in changing seasons: https://musingsofanaspie.com/2014/10/23/changing-seasons-and-sensory-sensitivities/ . This can also be applied to the changing season of Covid and some anxiety, behavioural changes and sensory preferences that could happen to any Neurodiverse child ( again this does not apply to just autism but a lot of diverse people groups.)

Also, just like there is a spoon theory for those with chronic illness, it also applies to those with disabilities: https://musingsofanaspie.com/2014/10/15/conserving-spoons/  I think many "ordinary" people may actually feel that they are not normally abled during this time. It's not the same as being disabled in day to day life, but some may feel some of the same restrictions that disabled people feel daily. This is when the "normal majority" may be able, in some small ways, to understand those of minority to a degree. They are walking in the shoes where culture collides with normal living.

Cynthia wrote HERE about liminal spaces like the current Covid situation; "It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to. It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown. It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not. It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.
It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu." 



If a "normal" parent needs to tell themselves these facts during this liminal time of Coronovirus, how much more does a child need to hear and FEEL this allowance from their parents? How much more does a neurodiverse adult need to make allowances for themselves or have their families give more understanding?

Where do I get authority to write about this? I am a wounded healer. My so called faults are also my virtues. In native traditions, the wounded healers were those who had been through something and survived, and then in turn brought understanding and solace to others. They have faced the challenges where the wind blows the hardest and yet their roots run deep. Their strength is in the difficulties they have learned ways around or acceptance in living those differences out. I have been deeply wounded by experiences. I have also healed some of these wounds. It is a journey. I am autistic. I am not ashamed of who I am but have had to face shame before and will again. I have multiple disabilities but I also have multiple abilities. I see the world differently. My children also have differing brain wiring, abilities and disabilities.

I read this post https://www.learnfromautistics.com/autism-interview-121-autistic-soul-on-late-diagnosis-fantasy-and-autistic-identity/ and for a moment I wondered if I accidentally wrote it in my sleep! I could have almost written it word for word. Which tells me that my experiences are not just mine alone. Some may be particular to me, but the larger lessons I have slowly learned, can perhaps help others? The numerous articles I have consumed and made part of me, can now be helpful to those who do not search for such things, but need the alternative perspectives to understand the differently abled around them. If you have such people in your life, please read or mark the short articles for later that I have referenced here. They may just help you during this time too.


*If possible get together with a few safe friends whom are healthy. Just wash. Human connection in person is healthy for your child too.



Song Choice: Life- Our Lady Peace "Oh life is waiting for you. It's all messed up but we're alive."