This year’s World Autism Awareness Day is going to be different to any other since the very first in 2007.
The impact of Coronavirus has been massive to all of us, changing the way we live our lives to keep one another safe and to support the over stretched NHS. As we have all seen in the media, not everybody has been able to adapt to these changes or have chosen not to and these are neurotypical people who do not want their lives and routines disrupted.
For us as a family, and for many others in the exact same situation Zach is totally dependent on John and I. Without us he would not manage, we cannot be ill. We need Zach’s home life to be as it was before Coronavirus and that includes smiling a lot, laughing, cooking, cleaning, looking after Zach’s personal care, taking Zach out in the car and for walks.
Like so many other people we have nobody except Beam who we could ask to take care of Zach if we were seriously ill. There is also the isolation period which would be incredibly difficult to cope with. Please see my previous post about a day which Zach spent at home.
I am also a Community Nurse, going into other peoples homes at the moment is not something which I am keen to do especially when I have a 22 year old son who has autism and complex needs at home who is dependent on me.
Imagine having autism and being told that everything you do on a day to day basis is going to change and not understanding the reason why.
You also have to stay 2 meters away from everyone! Try telling that to someone who has little or no concept of personal space.
Most people who have autism find change difficult to cope with, especially when their routines are deeply entrenched and can be the very thing which keeps their anxiety at bay. The predictability of having one or two things through the day which you know are going to happen are very reassuring.
Lets add to that, all of a sudden you aren’t being given the brand of breakfast cereal which you have been eating for the last 6 years without missing a day. The cereal you are being given looks completely different, you can’t bring yourself to eat it so you go without despite being hungry.
I am not sure how widely known it is that people who have autism very often refuse to substitute their chosen brand with a different brand of exactly the same food. Without the Coronavirus it can be extremely difficult sourcing the exact food item needed, imagine what it is like now!
Branding is so important to some people who have autism, its usually about the way the food presents rather than the taste as if it looks wrong it is highly unlikely it will ever get tasted.
Zach’s day usually has either golf or bowling involved and has done for quite a while now. It is important to Zach that these activities happen, he goes to a variety of bowling alleys and places to play golf. Suddenly all these places are closed and Zach doesn’t know why? His support team have taken him to show him that these favourites are closed and locked as they did not want him to think that they were open but he wasn’t going.
We are very lucky that Beam are continuing to support the young people they work with, at a time when their lives have changed beyond recognition they are at least seeing the team who support them day in day out.
Zach’s team are being creative and finding new things to do with Zach during the day, he now has some exercise equipment at his base so he and they can keep fit.
Obviously just because Beam Team are Superheroes doesn’t mean that they are immune to this awful virus so correct procedures with isolation and being extra careful apply! Thank goodness for Beam!
A massive concern if all support stops is that it maybe like going back to the beginning when things start again, the new norm will be staying at home and people who have autism often don’t like change. (sorry I’m repeating myself here!)
It seems strange that just a couple of weeks ago carer’s were being called ‘unskilled workers’ and they are now being applauded by the very same people for continuing to work despite the crisis we all face.
I am sure I have blogged before about the fact that this country (and every other I imagine) could not run without the expertise and support this sector of the workforce supply.
If those in Government consider working in a care environment to be an easy job I would like to see them walking a day in the shoes of someone delivering care. Not just to those who have autism but the elderly, physically disabled, those who have dementia, long term illnesses, mental health illness just so they can find out what skill is actually required.
Its for this reason that Spectrum of Misconceptions World Autism Awareness Day message has taken on something of a different meaning certainly, the Beam Team ‘Can and they do’!
The Coronavirus Bill is a huge blow to those who have autism and complex needs, along with the vulnerable needing Continuing Health Care and those who have mental health illness.
Although the first couple of paragraphs of the bill are about ‘our NHS’ (which Government have been neglecting for as long as I can remember and I have been a nurse for 30 years) they draw the reader in to feel it is for the good of everyone and then BOOM! it takes us back years by telling us that many parts of the Care Act of 2014 will no longer stand, that really frightens me.
Coupled with the Coronavirus Bill, initially NICE (The National Institute for Health and Care Excellence) suggested that the NHS Clinical Frailty Scale would mean those who have a disability should not be considered for a priority bed as they would be marked as frail on admission.
Zach is anything but frail!
Fortunately they have now back tracked on this but it comes as a massive blow that it was even written and agreed in the first place.
That some of the very people who have been told to self isolate would not be considered important or that the quality of their life is worth saving is a very stark reality.
This World Autism Awareness Day on 2nd April please remember that although we are all going through tricky times (and I absolutely recognise there are many other groups of people struggling as a result of CV19) those who have autism and their families are going through a particularly difficult time, when their every day life already sometimes feel impossible.
Spectrum of Misconception have sold plenty of the T-shirts we have especially designed for World Autism Awareness day and we want to thank everyone who has supported us and will be wearing their Tee tomorrow (its just a shame that they have to stay at home!). Here are some modelled by our customers.
Our message is still ‘I can and I will’ but maybe has a subtitle of ‘it’s just much more difficult than it was a few weeks ago’!