Last week was Autism Awareness week. I wanted to write something, but I was unable to, due to struggling because of the difficulties my autism causes. This probably says it all!
Many people meet me and say they cannot see that I am Autistic. My diagnosis is one of Autism Spectrum Condition. In the right environment and with understanding, I can be a highly functional and capable person. I am probably someone who is labelled as ‘high functioning’. I don’t have a learning disability and most days I am able to look after myself. I can also be disabled by my Autism which can result in me struggling to function. I have had hospital admissions and developed an eating disorder due to my inability to adapt and cope with change.
This blog can only cover my experiences. I have struggled to write it as each day I have guilt around finding things hard, partially down to recognising I am not on the front line helping people and partially due to knowing that my struggles are relatively minor compared to other Autistic people. I am using this blog to describe my experiences, partly as a way of getting them out of my head (which makes things easier to process) and hoping it may make others who are struggling feel less alone. I want to talk about how the global pandemic is effecting me.
Rules and information
I love information. I love to learn. I like to find out all about the detail of things. When Conorna virus started to effect the UK I was immediately in research mode, looking into what precautions myself, family members and other organisations I am involved with needed to take. I recogised the importance of social distancing before we went into lockdown. In the few weeks leading up to it I started to make decisions to socially distance – changing appointments to telephone instead of face to face, contacting the group I volunteer with to suggest they place the group on hold and also talking to vulnerable family members encouraging them not to attend social events such as a concert and church. These conversations were difficult, people didn’t want to listen to what I said, they wanted to wait for the government advice. I got upset because I’d read the research and felt the sooner we started distancing the less pressure it would place on the NHS. When the government changed the guidance to bring in Lockdown it was a relief, there was less ambiguity and it backed up what I was saying to people.
Even once the Lockdown rules were made it still felt unclear to me though. Exercising locally is being interpreted in different ways, some saying people can drive to exercise and some saying people shouldn’t be doing this, due to it falling into unnecessary journeys. Peoples interpretation of what is a necessary journey can vary. The exercise rules don’t state how long people can exercise for, but ministers are making recommendations which aren’t actually rules. Social media is filled with people saying ‘stay the f**k home’ When I see this message I feel filled with guilt that I am taking a walk each day from my home address. I know logically that this is within the rules (so please don’t repeat that it’s okay to do so!), but when senior people are telling me to stay at home it’s confusing. Social media is filled with people arguing about the rules. When taking a walk not everyone is following the rule of staying 2m a part. When I feel someone is not following a rule it can be unbearable not to challenge them, but this can then leave me open to abuse, especially if I am on my own. This is an issue which is specific to my Autism which has caused difficulties in numerous situations in the past.
In terms of rules what would be helpful would be for the exercise rules to be made clearer eg: – exercise for no more than an hour once a day from your home address, (registered disabled people the only acceptation to driving to a location locally)
Change in routine
I’ve seen many people on social media making quite broad and sweeping statements. The main statement being that autistic people are happy about Lockdown, as self isolating is what they have been doing anyway. We have to bear in mind that we are all individuals, making sweeping statements is not helpful- some people might find it a good thing, some people will have entirely the opposite experience. Although I appreciated the reassurance and clarity that Lockdown brought it created a huge amount of distress and anxiety due to the change of routine. 3 weeks on and I still haven’t adjusted to this. When I do hopefully adjust I know I will have to go through a whole new adjustment especially if social distancing rules regularly fluctuate.
The advice is to plan a new routine, but every part of me is screaming that I want my old routine back. I know that everyone is struggling with changes to their routine, autistic or neurotypical, but I just can’t get my head around adapting to a new routine at home. I can’t easily replicate the things that helped me in the community – volunteering with a walking group, college, caving and spending time with my Mum. My Mum was a huge support to me, although she isn’t my carer as such she still played a big part in keeping my mental health stable, regularly meeting up with me and getting me out of the house. The changes have triggered depression, which then makes it harder to engage in distractions such as reading a book or watching a film.
I have always done the food shop for my family, even before I developed an eating disorder. Pre eating disorder I still had very rigid patterns around food. I can’t now do our food shop as I don’t drive and can’t go with my partner. Getting an online delivery slot is challenging, if not impossible. Many autistic people can only eat specific foods and it’s not as easy as just having something different. Not being able to get an item can be the difference between someone eating and not eating. The panic buying of certain items has not been helpful – if a shop is sold out of bananas there is no similar alternative. I can’t see an easy solution to these difficulties, I am trying to spend time thinking about alternatives to what I can and giving my partner really clear shopping lists with alternatives if possible.
Everyone is now connecting virtually – using technology such as Zoom or Skpe to carry out activities via video link. I can use video communication, but I find it mentally exhausting. My medical appointments are gradually moving to video and I also have to keep in contact with my parents and brother via video. Although I don’t like doing it I recognise that having my appointments via video link (rather than telephone) makes it easier for me to process the information. Having a written summary of the plan after the appointment is helpful and I make notes beforehand.
I’ve been trying to confirm what is happening with medical treatment and clarify my care plan. I know it’s an uncertain time for care providers, so I can’t be upset with them, but for an autistic person having a tiny amount of clarity or stability in a very uncertain time can mean a lot. Things are starting to become clearer which is helping my anxiety a little.
I also realise that my parents and brother are isolated, so feel I should try to keep in touch with them. Once I’ve done all of the above I don’t feel able to use technology for other activities such as fitness classes or creative groups. Attending a group on Zoom with lots of people wouldn’t feel accessible as too many people is overwhelming. If someone is providing a group online it would make it more accessible if numbers were limited and that number was clear.
I’m not sure about connecting with the few friends I have in the community in this way as much of our interaction was during undertaking our hobbies such as caving. Without undertaking the hobby the social chit chat becomes much more difficult. I feel lonely. One thing that has helped is setting up an online photography group for Autistic people in my local area, I was due to start this as a face to face group pre Corona virus, but it’s now on hold. I enjoy setting challenges for the group and talking about our photos. In terms of my family I am setting a limit on using video messaging once a week as that feels manageable.
I live with my partner and daughter. I am used to having some time alone during the week. My daughter also visits her Dad twice a month. At the moment we are all together, all of the time. At first I was taking every daily exercise with my family. It started to become overwhelming, so now I am trying to get out on my own at least once or twice a week. My daughter was due to take her GCSE’s this year, these have now been cancelled. We won’t know if she will need to do retakes until she gets her results in July. For now it feels challenging to know what work to get her to do. I feel anxious about whether I am doing enough. We both have medical appointments which are now taking place from home. I noticed that I felt less open when people were in the house, so we are now making sure we are out of the house taking exercise so whoever has the appointment feels they have a confidential space.
Noise and safe spaces
For me this is probably the worst thing about Lockdown, not feeling like I have easy access to quiet open space. Pre Lockdown my local open space would be quiet mid week. When I was struggling I could go to the woods and sit quietly on my own to think, on my own special ‘thinking tree!’. Now during most of the day the open space is busy, I don’t feel able to sit down due to the guidance about ‘not sunbathing in parks’ The stress of trying to keep 2m away from people can actually make taking a walk counterproductive. Where I can I am trying to get up early to take a walk, as this usually means it is less busy. I live in quite a closely packed neighbourhood, we are incredibly lucky to have a garden. At the moment everyone is making the most of their gardens, having BBQs, loud music, children out playing all day long. I don’t begrudge people that. Our neighbours dog barks on and off most of the day. Last weekend the people on a street close to ours had a ‘socially distanced’ street party where they had a PA system playing music. Usually I would escape this by going out for a walk, but I’d already taken my daily exercise. Pre Corona virus I’d be spending much less time at home due to volunteering and other things, so I’d have a break from the noise. At the moment it feels relentless and I am worried about getting to the point that I get so upset and angry I explode into meltdown – it’s having a cumulative effect on my mood. I am going to try and find quiet local spaces to walk during weekend afternoons to avoid the garden party noise and I am also listening to music on my headphones a lot at home to try to block out the noise.
Worries about becoming unwell
I have had hospital admissions in the past due to my mental health. During past hospital admissions I’ve had a lot of support from family members acting as my advocates and spending time with me to minamize my distress. I know that if I was admitted to hospital at the moment I may not be able to have someone with me, there may be the option to request one person due to my diagnosis, but understanding what I know about the virus I wouldn’t want to put any member of my family at risk, as that it more of a concern to me than my own health and well-being. I have my own Autism passport which sets out my needs, but Jessica Doyle has created a Corona Virus version of something similar which I think could be quite useful to complete and print out. I think it’s a good idea to have it ready and printed as a ‘just in case’ item, also by trying to problem solve worries it can make them feel a bit more manageable.
It is an unprecedented time for uncertainty. I know everyone is struggling with this. For Autism Awareness (acceptance) month take a moment to understand how hard this is for Autistic people. Try to ask what will help and adapt things as best you can. If you can give certainty about even small things this is grounding and helpful. Be mindful of the impact this could have on an Autistic person’s mental health, don’t invalidate peoples experiences by saying it is hard for every one. Watch out for warning signs of the deterioration of someone’s mental health and take appropriate action to help.
At the moment the following things are helping me a little:
Taking time to sit in my garden late morning or evening when it is quieter. Watching the birds and noticing the insects.
Problem solving where I am able to, seeking support from others to do this.
Writing down a structure, but being kind to myself if I have a day where I feel unable to follow it or do anything.
Taking notice of the changes of season when outdoors, the different flowers appearing, buds or blossom on the trees etc.
Trying not to obsessively research things too much – 1 daily check on the news a day.
Choosing one bigger household chore a week to do. (if I feel able to)
Being open with health professionals about how they could adapt their practice to make it as helpful as it can be.
Lastly – take care everyone.
Here is a nature photo for you