Anna Kennedy OBE’s guest this week is Jo Luck Charity Patron who talks ‘All things Autism and Covid’
Jo came on the show roughly a year ago, she is a patron of AKO and has Aspergers and ADHD. Jo is a multiple kickboxing world champion and is highly intelligent but still faces significant challenges in day to day life.
Despite these Jo is not only committed to finding strategies and solutions to overcome these but also in raising awareness about the challenges those who are autistic often face, how these can present and the barriers there are to accessing support.
1. It’s been a year since we spoke last on the show, things are certainly very different now due to covid, there are a lot of changes to daily life – how are you coping with this and what has helped you?
I’ve just been using the situation to give myself a chance to recharge, reset and refocus on using the time I’ve got to do and tackle things I wouldn’t usually.
It’s given me the chance to put structure in place and taken off a lot of the external demands and pressures so I think largely it has been what I needed.
However that’s not to say that it hasn’t also been hard and difficult particularly around the uncertainty of the situation and worry about relatives. I was keeping a gratitude diary which I would highly recommend as it really boosted my mental health and well-being. I kept it as a video and it just made me feel a lot more positive about life.
2. How are you keeping yourself occupied and busy with all that is going on?
Well I have been doing a lot of DIY and work around the house similar to what a lot of people have been doing.
I anticipated the lock-down and got a load of DIY supplies before it started and really I’ve been working down my to do list ticking things off that have been on there for a while! I have been working through therapeutic workbooks and doing activities from those.
I also ran a workshop for AKO a few weeks ago on dual diagnosis of autism and ADHD which was very well received and I enjoyed doing a lot.
I’m planning to do more and I’m looking at doing a workshop on behaviour as communication, what it tells us and why it might occur and also leading to creating resources and teaching how to create things like this. We just need a date!
3. Last time we talked a lot about kickboxing, obviously you’re not able to do that at the moment – how is that for you and what has changed since then?
I was lucky that I was able to compete in a couple of competitions just before all the lock-down started, I got two bronzes – one in the WAKO British Championships and one in the Irish Open.
I was in Ireland just at the end of February and also came away with broken ribs! A few days after that I had procedure on my foot so I did really well in my competitions given that I hadn’t been able to train as much as I’d have liked to due to the issue with my foot.
But I am finding the lack of training now difficult, at first it was ok as I was recovering from the injuries but now it’s frustrating as it does help me to regulate. I’m trying to do training at home but it’s not the same and I really miss my team. I’ve also been getting more involved in working with the local NHS trust.
4. You mentioned involvement with the local NHS trust – what does that involve and how have you found being a part of this?
So I’m from Northamptonshire and I got involved with NHFT last year after I’d had some bad experiences with mental health support. In Northants we have an autism advisory panel, which I am part of, made up of individuals and family members of people who are autistic. And we are there to offer lived experience, insight and input into improvements and current ways of working.
The autism lead in our county has established an “Autism Champion” network which is an opportunity for a designated professional from different teams and companies to meet every month and discuss and learn from each other.
Sometimes it is sharing any issues or improvements made, there is a speaker at every meeting and there are also chances to work together on projects.
There are also action groups which focus on key areas such as diagnosis, service provision, quality and communication of services among others and I am a user lead of some of these.
It’s all very collaborative and I think this is really important and it’s given me some purpose and made me feel valued.
5. Do you feel your involvement work is making a difference and would you recommend this to others?
I’ve also had the opportunity to offer some training through sharing my lived experience, I’ve given a day long training session to non clinical staff, 3 separate sessions to LD providers, Ive presented to the acute mental health liaison team which was not easy listening for them but I feel it was received well.
I’ve had a lot of planned opportunities have to be cancelled because of COVID which has been unfortunate. It’s nice that the value of these sessions is seen.
I also recently presented to the Council of Governors of the trust, this group of people are there to hold the top decision makers to account so it was a really important one. I wasn’t expecting the response I got, it was very profound and the presentation was probably the most emotionally difficult one I’ve ever done as I really put it all out there for that. I had great feedback with a lot of the audience feeding back immediately what they were doing.
They truly weren’t aware of the extent of difficulties facing those with autism in accessing support and on the back of my presentation motions for change have been raised. So I feel it is really important to share stories where you can and that also it can really give you a voice in bringing about change.
6. Is there anything you feel is important to bring more awareness to?
One of the things that has been discussed regularly at the autism champion meetings has been sunflower lanyards. Now most people know about the use of a sunflower lanyard at airports but they have also started to be used more widely in places like shops and other community facilities.
Places like Argos and Sainsbury’s started to adopt them and lanyards can be obtained through them. They are also available through https://hiddendisabilitiesstore.com/?SID=0f97cb2e2d90d35c88eeac472799cd30.
I think it is important to raise awareness about this and what it means so that it is more widely known and that people will understand what to do if they see someone with a lanyard in distress.
For me it has been useful and helped me to become more independent knowing that if I become distressed at least there is something that identifies I need some extra help. It’s just now needing more people to understand what it means.
In Northamptonshire due to COVID the police have all been briefed on the lanyards and what they mean so that they can identify if someone is out more regularly or with others because they need to be and they don’t need to question them.
Another thing I think it is important to raise is about the difficulties accessing and identifying appropriate support for those who are autistic. I have been looking for support to cover my whole hours of social care for nearly six years and we have reached the point that we have exhausted every option in the county.
7. In terms of support, has COVID changed this and how?
Well my carer is in the shielding category and I only have one as I’m “too complex” to support. So we have been having daily video care sessions which has been working well.
It has given me a fixed point in the day, we have scheduled the care sessions and activities for the whole of May and we are getting a lot done and getting through things that have been on my to do list for a while which haven’t taken precedence.
We have inputted and broken down all the planned activities onto an app called Carezone which I use to coordinate care. My carer has access and I can assign to dos and calendar events to her. I find the video call to be less stressful as it is shorter and I don’t have to adapt to someone physically coming into my environment so there is less transition. I mean some days I’m grumpy and oppositional, nothings a miracle fix and infallible but it’s going well.
There are a lot of things you can achieve while on video call and I think it could be an option for supporting higher functioning autistic adults – not wholly virtual support but a mixture of that and physical support.
It would open up many more options in potential support providers. I also decided that while COVID was happening that I could definitely say that finding the additional care I need wasn’t going to happen as it has seemed very probable that providers would be less able to take on new clients and in any case I would not be able to make a planned transition into having that support.
So that compartmentalisation has been really helpful because that situation for me has been incredibly stressful.
8. What advice would you give to care providers on supporting autistic individuals and what would you like to see change?
I have a really good relationship with my carer because she treats me like a person, we use a lot of humour to defuse situations and I feel relaxed and accepted, I know I can be myself with her which has also meant that it is easier for me to communicate. I know she doesn’t fully understand all of the way I see things or difficulties I have but she is open minded to it and works with me.
I think it is important that care providers develop as much understanding as possible from those who are autistic and that they view behaviour as another form of communication as if you aren’t able to communicate effectively or at all using words then how else do you tell people things which are bothering you or are significant?
Many people believe that visual supports are only for those who have no communication at all but I need those things at home, I need a lot of prompts and reminders. If I don’t have visual plans I’m lost, I need explanations for when I am stressed as I’m less able to think rationally and those written explanations do help to alleviate anxieties.
I have found a few resources which may be helpful to others:
https://symbolworld.org/ – this has a range of social stories made on current day to day news, information etc, there are stories on the coronavirus available here on https://widgit-health.com/ – this is for those who think more visually, they have a lot of free downloadable resources currently, they have templates for communication aids relating to health, these would be quite useful now in the case of needing to visit a hospitals.
There is also an app I use called Ask which stands for Autistic Space Kit. This is a tool which helps those who are autistic to communicate and enables you to share location easily if necessary. It’s worth checking out – http://www.arghighland.co.uk/.
The interview can be heard at 1pm and 1am everyday this week on www.womensradiostation.com