This is an alternative format transcript of our online Q and A on stress in autism with Joe Powell, which took place on 8 April 2016.
Welcome to our online Q&A, thank you very much for joining us. We are really pleased to have Joe Powell with us today.
Is a pleasure to take part, I am really looking forward to hearing your questions.
We will try to get through as many questions as we can in the next hour. Your question may not appear immediately, but we will publish and answer them one by one...
First question emailed in by Heidi: Hi I work with children with learning difficulties and autism. We use emotion scales to calm, and exercise. Would teaching children how to relax or yoga help with stress levels? What's the best thing to teach children to help with stress?
I have no doubt that this would be really helpful. This is certainly something I have always sworn I would do and have never gotten around to. Also I feel from a physiological level it is clear that the human body does benefit from breathing exercises, medication etc and therefore anyone would benefit in some ways from this.
I feel this is why it is so important that young people understand their condition as soon as possible and learn to acknowledge that it is a part of their lives that will always be with them.
I think once a person can come to terms with that, they can learn these coping strategies as soon as possible, but also take a lot of pressure off themselves to be like their non-autistic peers.
I also feel that for the younger generations of today, learning to self-advocate (where possible) and know their rights will make for a more comfortable and independent transition into adulthood and will save a lot of anxiety and stress in the future.
Another question by email: Where do examples of good practice in the Care system exist, and how can these be replicated/rolled out? Alice
I hate to be cynical but I am not aware of a lot of good practice in the care system, which is something I am really worried about. I feel we still have a system, which places the power in the hands of service providers who are not accountable in the way they ought to be and who use resources to suit organisational pressures rather than ensuring people get the support their authorities are paying for.
I believe the key to fixing this, is only paying for services, which are delivering what they have promised and in making sure that those who use services (or their families) are the procurers of those services and to give them the ability to move from a service they are not happy with.
At the moment the problem is that local authorities procure services and most of the negotiating about services are done between the authorities and care services without the relevant service user/ family involvement. People with autism and their families are too frightened sometimes to complain when they are unhappy (especially those in the most specialist services) because they fear that they may jeopardise this funding and local authorities may place them somewhere else far less suitable.
I really feel the only way that this is going to change is shift the emphasis from service provider to service user. I also believe that it is vital that inspection teams in Care and Health work together in close proximity with parents, people with autism and other professionals to try to make the inspection system as consistent and robust as possible across all sectors.
In Wales (where I live), the CSSIW and HIW (Our Social Services and Health inspectorate teams) have introduced advisory boards, which hold them to account and who include people who use services as well as parents of those who use services. I feel this is a strong way to promote good practice and to help those who inspect services to ensure that the work they do is relevant to the changing times and aspirations of the people who use services.
I have an autistic g son who is a delight - age 11. He has 'bad thoughts' which he can share but Is love and reassurance the answer ?
I assume by bad thoughts, you are referring to anxiety etc or worries. I think love and reassurance can certainly go a long way, and that isn't to be taken lightly but I also think making him as aware if his condition as possible and the fact that the 'bad thoughts' are going to be something he may have to be prepared for, can help him to take control and implement his own coping strategies.
I cope with these situations personally, by reminding myself of how well I cope, considering the extra pressures I have that my peers don't and also an awareness that managing these emotions will always be inevitable for me.
Thank you for the questions received so far, please keep sending them in...
I work with children with Autism in school (in a specialist unit). How do I help the children to be more aware of their emotions, and help them respond to them constructively/ positively (rather than having a 'melt down')?
Again, I think this is where (where possible) people with autism need to understand themselves, their condition and have a realistic expectation about the way their conditions will affect their lives. Of course for many this is more difficult than others.
Because of differing communication needs and self awareness. I think something that I would have benefited from at that age, is an awareness that my feelings are 'normal' human experiences.
Even if they are heightened by the fact I have autism, and also an awareness that it is alright to feel this way and also that it is fine to express this. The fact that it is not only appropriate but it is my right to express these feelings.
Hello Joe, My daughter was only diagnosed with Aspergers last year at the age of 16, she is now faced with final Baccalaureate exams in June, which has resulted in so much stress that she is only attending school a couple of hours a day, we've had to bring in private tutors to help and she's on liquid prozac to help the depression she's suffering. Do you have any advice as to how I can help her to reduce her stress in the following 2 months as I fear it is going to become unbearable for her and the rest of the family. She refuses to participate in any sports or even go out of the house, except when she has to for school. Thanks.
Hi Sonia A
I personally cope with these situations by being prepared well in advance. I find writing down the key questions that I anticipate will come up in an exam and then rehearsing the answers is incredibly helpful.
It is repetitive and robotic, but you get to a point where you just trip the answers off, when asked by a friend or family member and regurgitate the information almost without thinking. When the answers can be given.
Prior to the exam, and you are confident in doing it, it takes less and less rehearsal time when coming up to the exam which means the person can relax. When you sit the exam, it can be an exhilarating feeling.
To see the questions and have all the answers almost programmed into the brain. This is what works for me and gets me very good grades. I hope it can be helpful for your daughter. In a nutshell I am saying, preparation and anticipation in advance and testing.
herself along the way with positive support from family to how well she is doing, will hopefully give her confidence going into the exam.
Does your workplace make adaptive measures to help with your autism/stress?
Absolutely! I think this has been a major factor in the success of my post. At first, (whoever got my post) was going to have a support worker to work with them but in my case it was apparent that this would not be appropriate (and I wouldn’t have liked that) but the way my post was integrated was gradual.
At first as National Director I had equal management responsibilities with our Business Manager and National Council Development Officer and as I gained more experience and confidence, I was re-graded to the senior role and our board helped to make sure that I was able to recruit the best staff team available to help me make my job a success.
My colleague Yvonne Boxall was a brilliant mentor in my role and was in effect our Director before I was in post and she taught me the job in a very supportive and professional way, and I have no doubt that this has been a key component in the success of the role. She has now retired but will be doing my supervisions and this continued mentoring is undoubtedly going to help to make sure I continue to progress.
We are already half way through the session, lots of interesting points covered and another 30 minutes of questions left...
Margaret emailed in this question: Hi Joe- I have a daughter with Aspergers who is extremely intelligent where her treatment has seen extremely challenging behaviour, horrendous self harm and high amounts of medication which only seem to make things worse. The staff of the hospitals she has been in are very ignorant about Autism and she was given a Borderline Personality Disorder diagnosis for years before finally her ASD has been acknowledged though really not taken into account still. How are we supposed to push for change and education of these so called professionals who are merely exacerbating her anxiety and meltdowns because of outdated attitudes and preconceived ideas?
Firstly, I can absolutely relate to your experiences (although in a different way) the core principles are the same. So much is emphaised by this idea of ‘specialist services’ being the be all and end all of good outcomes for people with autism, and I have not yet seen any service, which is specialist.
More to the point there is little to no incentive for these services to change or adapt their way of thinking because they have always been guaranteed to be funded as the recognised provider of said specialist services and this has bred a culture of arrogance and a reluctance to change.
Specialist services for instance, are lagging behind in terms of personalisation and person centred planning and I don’t believe have spent very much time looking at it, other than in the stereotypical way and often bastardise the concepts so that it fits with what a service can deliver.
Yet they gain massive amounts of public money to promote rights that often they don’t practice themselves. As long as they are not accountable and the people who use these services are not purchasing them, I don’t feel they will ever change unfortunately.
I feel the arrogance breeds reluctance and a defensiveness to listen to constructive feedback or consider new approaches and until this happens, things are not going to change.
I am involved at the moment with what I believe to be a groundbreaking organization called AtAutism whose -Autism Synergy programme, which is designed to manage and reduce staff stress by increasing their self-awareness is one such approach which, could be incredibly helpful.
Have you always declared your autism/learning disabilities when seeking employment? Kiran
I personally would always declare this, because I feel being honest with myself and others will save so many other complications in the end, although I am also aware that those who do not understand the condition may then be reluctant to take an employee on. I would still do it however.
I have had two jobs in my life time, the first as a summons clerk for Northumbria Police and currently as the National Director of All Wales People First. In my first role, I was not diagnosed with Aspergers’s so declaring this was not an option and in my current role, having a learning disability or autism was a key requirement for all applicants so that was something that actually went in my favour on that occasion.
Hi Joe. Great discussion. Can I ask what can be done to support children with autism in mainstream to get adequate support before we reach crisis? It seems that things have to get really bad before any help is offered and schools don't know where to turn. We need more programmes for self esteem which are the norm and more easily accessible but they are few and far between. who needs to push for this? parents who are exhausted often or school or the organisations themselves?
Well, I do think that this is still a major issue and is a lesson we are not learning. We are still working in a reactive way towards autism and this is not helpful. We fund people in crisis and then pull the rug from under them when they make progress.
And so the cycle continues. In Wales there is a new act called the Social Services and Well Being Act, which aims to provide 'Preventative Services' the aim being, to stop this kind of thing from happening '...."
I believe a lot of issues around self esteem are caused by bad life experiences from poor support (certainly in my case) and this is why it is vital we change this. I would like to see the whole of the UK only fund services which actually deliver on their promises and work in a preventative not a reactive way.
We have just over 15 minutes left, time for the last few questions...
The next question by email from Miriam: Have you heard about or found any specific techniques like mindfulness or biofeedback to be helpful in managing anxiety?
[ Our new ‘Essential Guide to...’ series of publications including topics like anxiety and challenging behaviours may be of interest to viewers: http://researchautism.net/e... ]
Well, this is something that actually I am looking into myself at the moment. Although the levels I experience are probably higher than my non-autistic peers, the more I am around the autism world, the more I am convinced that many of the tried and tested techniques who help people without autism to deal with stress are also appropriate for people like me and have the same relevant impact.
I am looking into Gestalt therapy at the moment, because I still have a lot of mental health problems which have not been dealt with from the past, a lot of which are caused by not being able to understand why certain things have happened to me in the past and process the information properly.
Hi Joe, my daughter is 17 and was diagnosed with Aspergers/ASD level 1 in November last year. She completely broke down (anxiety and stress related) when she started college and she is now studying from home. She now lives and studies in a comfortable bubble where stress and anxiety triggers are minimized - I am very keen for her to start to face the world again but is worried about having a re-lapse of the sitauation we had last year. Just mentioning the future already makes her very anxious and she avoids talking about it, any advice on dealing with this situation?
Well, I think what has helped me is to understand that my life journey its very different from my non autistic peers and this has helped me enormously to be realistic about my life and my expectations and this has in itself take a lot of pressure of me.
I think by setting small and realistic goals (even if it takes years) your daughter would hopefully be in a position not only to see the end target but to work to it, bit by bit and gain confidence in the series of small success she is having along the way. I feel this realistic approach would be a very helpful way forward.
I read that you were non-verbal whilst in care. How did you overcome this?
This is quite a complicated answer but in a nutshell I would say I was dropped in at the deep end and learned to swim. I often use the analogy of being non-verbal as having the same psychological triggers as someone who is anorexic who doesn’t eat because they feel losing control and gaining weight. The negative feedback in my life changed once I became non-verbal and quiet and shy, and I then took this to obsessive levels.
I associated talking with being a bad person and going out of control because no one had ever explained to me the way people and society worked in a way that I understood and being non-verbal was my way of coping with this. In a care service in Manchester, my mental health deteriorated again and I started displaying challenging behaviour and had two enormous breakdowns and I think this was the start of (an almost sub-conscious) realisation that I had to speak for the sake of my own sanity.
Even now I get incredibly anxious and highly distressed if someone comments on the fact I talk too fast or talk a lot and I get really depressed, so I think the core component issues are still there but I have learned to deal with them better.
Sorry big question Joe. You will have heard of the systematic abuse of autistic people at Winterbourne View private hospital by staff. These things keep happening in the care system despite endless assurances and enquiries. Do you have any idea why and what can be done to stop it. Thanks, Mike.
What upsets me about this situation is that years before Winterbourne, I was saying that abuse of people with autism and learning disabilities was inevitable, and predicted it long before Panorama exposed this abuse. I was privileged enough (through Research Autism) to have the chance to speak in front of politicians such as Ed Balls, David Cameron and Mark Harper (amongst others) and I warned then that if someone like me, with good communication skills could be exploited the way I was in care, in terms of being bullied by staff then it is highly likely a person who has limited communication skills would not be detected if something more serious was to occur such as physical or sexual assault.
Also their lack of communication skills would make them more likely targets to this kind of abuse than people like myself. I could not say for a fact that I knew Winterbourne was happening, but I was fully aware that if serious abuse was taking place that neither the care services or inspection teams could detect it.
I feel that organisations who work with autism have had enough time to address this, and haven’t started yet. They spend a lot of time taking the moral high ground about what governments etc should be doing and are not taking responsibility for their own services. I feel now that it is the government itself through the inspectorate who need to take control of these organisations and ensure they are delivering what they promise and are only keeping people in services for as long as they need to be there.
We will be ending the discussion shortly, very sorry to those who haven't had their question asked today...
I have just watched your video on anxiety which is great but you seemed to be anxious all the time. Are there any times when you are not anxious?
[ You can view this video on our website http://researchautism.net/i... ]
I would say personally, that there are not times when I am not anxious, just times when I am far less anxious than at other times. The closest I get to being calm, is when I am in my flat on my own, without people. Even then I can be prone to obsessive anxiety and rumination.
At the moment I do comfort eat and comfort spend and this is one of the ways (although very damaging) that I cope and if I didn’t eat so much, I feel I would really suffer. I am not saying this to upset anyone or to sound chilling in anyway, but there are very few times I don’t fantasize over suicide or research the most effective and painless methods to do it.
The reality is that I have been severely damaged by my experiences of living for years without a diagnosis and inappropriate support in care service and it has inevitably led to me suffering as an adult. This is why I feel it is so important, we give the best support to children as possible, because it is easier to equip young people with autism to navigate their way through life than it is to repair damaged adults later in the process.
Hi Joe, are there specific things that make autistic people stressed? I have a 9 year old son and he seems to get stressed when I ask him to do something new.
For me personally it is a lack of control and other people which are the bedrock of my problems with stress. I have no desire to control others, but I want complete control of me and like to do thighs in a way which may not always be practical or logical but are the way I like to do them.
Other people sometimes want to teach us the best way of doing things and get frustrated when we don’t respond and this puts pressure on us. I do think however that it is healthy to do new things and it is vital that people with autism get as used to this as possible because the longer a person is allowed to stay set in certain ways without being challenged the harder and more stressful it is for them if a time comes when change becomes.unavoidable in their lives.
I always think of it like frying an egg, if you keep turning it over, it doesn’t burn and stick to the pan. Once the egg becomes stuck it becomes a nightmare to scrape it off. I think your son coming to terms with that, controlled change with regards to small things at fairly regular intervals and the big impact it will have on his long term ability to cope with society would be a really useful approach to tackling this issue.
How do you think you manage your mental health/stress that is different to a neurotypical?
In my case I would say that this is where my diagnosis is positive. I think knowing that I am by nature a very nervous person and live in a very different world to my peers, helps me to put into perspective, how well that I am actually doing given the very difficult challenges I face.
Helps me to understand that many of my fears are not necessarily the complete reality and this is why it is important that I can check these out with people who do not have my condition. My friend (and former life coach Bernard Pearson) and a work colleague and now (I would like to think my friend) Yvonne Boxall have been key contacts for reassuring me of times that my experiences are normal and in giving me an insight into the reasons why people behave the way I do. My main coping mechanisms are alone time and fantasy.
People are my kryptonite and being on my own, to me, is like having a massive stress detox. Socialising, more often than not causes me more pain than joy, so this withdrawal has been key to managing my stress levels. I also like to play subbutteo, and make up my own stories and teams and play out my own leagues, create my own managers and teams and score my own league tables.
When I sleep at night I like to think of living in an indestructible one man spaceship, with impenetrable force fields around it and piloted by me and computers. This makes me feel safe and helps me sleep at night.
thank you so much Joe this has been a great discussion with your insight.
Thank you Joe for being our panellist today! It has been a pleasure following the conversation, and you have given us plenty to think about. We really look forward to seeing you in June...
Joe will be speaking at our half-day seminar ‘Practical Strategies for Dealing with Stress in Autism’ on 6th June. You can find out more on our website: bit.ly/StressRA
Thanks for your questions everyone, it has been a pleasure and a privilege to have taken part.
Can we get a print out of this exercise?
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