As always, this is based on reports made to me by autistic individuals and/or parents/carers, and is simply my opinion only.
Autistic children and adults do not hold a monopoly on feeling anxious – of course not; however, it is well reported that levels of anxiety in terms of both duration and intensity are frequently much higher for autistic people than the predominant neurotype (PNT). In other words, something that sparks anxiety might result in that anxiety being felt more intensely and for a longer time that might be expected for the PNT. And, of course, the causation of anxiety will probably differ considerably for the autistic person compared to their PNT counterpart. This can work both ways – what can cause stress to a PNT may not be at all problematic for the autistic. For example, speaking at a conference is one that is often cited – while often highly stressful to the PNT it may pose no problem for an autistic speaker whatsoever (needless to say this can’t be generalised); conversely, the PNT may feel relief when the talk is done and it’s the coffee break – and yet this is when the anxiety shoots up for the autistic speaker. What is critical here is to recognise that across neurotypes it is likely that anxiety-inducing situations are very likely to differ. This makes it very difficult indeed for one population to understand the other in terms of what causes anxiety, why, or even how that state is experienced.
But – what is known, is that some autistic children and adults can become so overwhelmed with the intensity of their anxiety that it either becomes paralysing (sometimes literally) or a fight or flight kicks in, leading to either ‘meltdown’ type behaviour or fleeing. Needless to say, in educational parlance the latter two are subsequently renamed ‘challenging behaviour’ and ‘absconding’, neither of which are seen as a positive! But what else is a person supposed to do? A huge pressure exists on the autistic population to simply hide their anxiety and get on with it, put up with it, and just try a bit harder please to fit in with how everyone else does it. So, sometimes, people do. They mask their stress, they hide it – sometimes really well. They make a massive effort at not having the meltdown that could act as an anxiety release, they force themselves to overcome basic instinct to run away from the intense fearful situation. And some folk do this every single day. Imagine that. Having to hide your terror at going into an unpredictable classroom just because no one else has an issue with it. Or having to attend the team building day at work knowing that panic will be ever-present. Or having to go to a party with a partner and be expected to ‘chat’ without embarrassing self or others. Or having to put up with the real pain experienced in the changing room at school on PE day. Or suffering through lessons in intense anxiety knowing at any moment the teacher might ask you a question in front of the class. The list is endless.
And yet – what is done about this? How does the individual find any release from this horrible – and it is horrible – emotional state that can be perpetual? Sometimes, good practice prevails. Teachers, parents, staff – whoever – recognise that the individual is in emotional pain and take whatever steps are necessary – not to teach the individual ‘coping strategies’ to put up with it, but to remove whatever is causing the anxiety in the first place. [Please note – some strategies to enable individuals ways to manage their own emotional states can be brilliant. What I am suggesting here is that attempting to teach an individual that they simply have to accept and live with intense anxiety is not in the slightest bit acceptable]. However, in other situations, the individual’s emotional state is not accepted, recognised, understood, taken into account, or even identified. The person is then left, to face their fears, sometimes daily, with no support or understanding whatsoever. This is absolutely not even close to being ok. This is far from what should be the norm. This can be the equivalent of leaving an autistic person in a living hell with closed doors, no way out, and no way to see how to change anything. This leads, fairly obviously one would think, to a life of despair or worse.
And yet, is it that hard to accept it when a child tells us “that stresses me out”? Or when an adult states that they find certain activities anxiety-inducing to an unacceptable level? Or when we witness a meltdown to understand that everything happens for a reason? That the individual isn’t choosing to be so stressed that they lash out, or self harm, or scream (etc.). It may well be that it is difficult or even impossible to genuinely empathise with why something causes so much anxiety – but so what? It doesn’t make that anxiety any less real for the person. One doesn’t always have to fully understand why a person is so anxious; one just needs to accept that it is the case, and embrace the concept that something needs to be done about it.
So – a plea. If you know any autistic person who is stressed, anxious, fearful – and nothing is being done about it, intervene. Do what you can. Understand that life with anxiety is not ok. Stress can ruin lives, even end them. Please: don’t mess with stress.
Spot on in every way. The children and young people I work with and my own two children encounter terrible anxiety. My daughter’s anxiety manifests physically – stomach migraines – for which she is currently needing medication in school and at home daily. she’s so desperate for the placement to work and to fit in but it’s very much taking its toll on her. Are we right to say to her that she “get used to it in time”…?
Well, it’s only my opinion but I don’t think anyone gets used to being anxious in that eventually it goes away, I don’t think that’s how it works. Maybe best trying to work out the why and attempt to change that?
Absolutely right in every way! Can I show this to the school?
Please do Vicki – and thank you!
Trying to get others to amend practices or make adjustments is very hard. For them, it is much easier to maintain the status quo and “reassure” the child and parents that it will all be ok.
I always like your posts Luke.
The hard thing is to know when the anxiety is at an unacceptable level. And is there an alternative that will definitely reduce it?
Drastic changes (e.g. New school or homeschooling) are anxiety inducing in themselves and what if you make changes unnecessarily and then again and again.
Aiming for no anxiety seems unrealistic, even the PNT have some anxiety. How do we know when our children’s anxiety is too high?
What if the child goes to school clearly anxious but comes home saying he’s in a good or a medium mood? Or today’s been a ‘medium’ day?
So many questions. It’s pretty hard trying to come to the best solutions as you know.
Shona
Hi Shona – for me it’s the ongoing long term increased stress levels that really concern me. Of course everyone gets anxious and that’s part of life, and as you note there are going to be individual aspects of living that stress an autistic child, change being one of them. But the long term damage done by ignoring anxiety that is perpetual is what the post was about rather than those moments of anxiety that are perhaps more easily identified – I hope that makes sense!
A really insightful post. It’s the whole square peg round hole argument. Force people to fit and they may appear to, but at what cost to themselves?
Thank you Fiona, take a look at the others if you get the chance and want to!
I’m now 60, and you have described here very accurately the almost constant anxiety I have felt in various educational establishments and workplaces for the last 55 years – and still I have no diagnosis – not even the label ‘anxious’. My frame-of-mind has never really been paid much undivided attention by anyone, and that has also meant that I have gained precious little respect and career success along the way.
My retirement ambition is to attempt to get some sort of diagnosis/closure on this apparently unsolvable personal issue. By retiring from working for others, and finding new ways to work for myself, I hope to reduce anxiety in my later life – regardless of whether any label will ever be placed on my condition.
Anyone out there need an elderly long-term expat research subject, living outside the UK? (Someone who is eligible for no assistance from the NHS.) I find a lot of one-on-one interaction really quite anxiet-breaking – even when it deals with difficult issues. It strikes me this might be one way to work for nothing in my own interest (but at least helping myself and others to be better informed). I have tried approaching various senior staff members in the local medical faculty with the possibility of having a suspected ASD expat available for running a few tests and enquiries, but they are apparently gobsmacked by such a notion. It seems they would rather ignore the issue, in the hope it might eventually ‘die’. (It is a faculty that really prides itself on its growing international connections.) My guess is that they don’t want to admit there are probably thousands of older people, local and expat, running around here who can never ‘cured’ in a profitable manner. They are beginning to talk about diagnosing ASD with older people, but I think the idea just isn’t cute enough for them or their public right now. To address such issues in a developing country would be to begin to expose all the nasty socio-political stuff which has been swept under the carpet for decades.
I kind of gather that Cognitive Behavioural Therapy (CBT) seems to be the current therapy in vogue for a whole load of things like anxiety and depression. From what little I have read, CBT seems to get the subject to work on his/her own negatives. Now I can quite understand how some people might be better off altogether avoiding a public performance, but it seems to me the idea of CBT is actually to be a better performer under admittedly difficult circumstances. My interest in all this is that I’m told an ASD diagnosis might well be followed up by CBT. Now I don’t really have strong feelings on this, either way, as I can see times when avoiding a performance might well be very appropriate, and others where it might well be possible for the subject to brush up his/her coping strategies.
This! The whole post. You’re an amazingly talented writer! Excellent points made about extremely important subjects. 🙂
Gosh this is a brilliant article & exactly what I’ve been trying to tell school for years. We e now hit crisis point for my my 8 year old son . He has ASD SPD & tic (likely Toueettes (. struggling in m/s school. He’s done his upmost & really tried. He wants to do well in school but sadly the gap is widening. He masks everything. Cannot discuss how he feel. An OT couldn’t believe how he can sit still when he clearly has tbe need to ‘fidget’. Even tics were held in until recently. Now a prominent tic has been displayed at school & his anxiety sky high. This led to him being unable to even go in late some days. The last 3 weeks have been awful. Even a reduced easier timetable & more laptop work has been too much for him. School are providing minimal support. He’s under assessment now. But the expectation is to still get him there & back full time. Even with the bottom tier of SS now hoping to ‘assist’ with getting him there. I know he struggles through so many lessons. Some 1.5 hours a time. Not understanding, worrying he’ll get it wrong, knowing others doing more, waiting for help. Yet they still expect him in. At the cost of his health?I said at a recent meeting with LEA early intervention is best. It’s already late for my son. I just hope he gets the help he needs & deserves. He’s a bright boy who just wants to please & be happy.
Hi Dawn – sending you all the best and here’s to hoping you and your son get the support you need!
Hi. Firstly love your blogs and your thoughts. I work with anxiety across the board. Each of us has things that make us anxious at different times with different triggers. Each of us is unique in how “we do ” our anxiety . It’s my belief that there is no one size fits all . No pill. That will help everyone in the same way , but I do believe, and through the work we do within the Ollie concept, can show that each individual can be helped to either deal with and so let go of the route course of that anxiety or learn simple techniques to help them cope. The more we use these techniques the more we teach our subconscious to change its initial response. We work with parents, teachers. Care workers the police and the nhs teaching people about this concept so that they can be empowered to help themselves rather than need any on going therapeutic crutches because to my mind that is another lable people dont need . X Ali
what the hell am I supposed to do, then? anxiety medication makes me sleepy, which makes me unable to fight my executive dysfunction, the medication for which agitates my anxiety. either way, I can’t function. I’m going to be homeless soon; do you mean to tell me I can’t do anything about it?
This is so spot on that I actually got tears in my eyes. It is amazing to feel understood. Now what to do about it? I have spent 39 years filled with anxiety in nearly every waking moment of life. I do “just get on with it,” but at what expense? Who could I be if I didn’t have to?
Thank you for your book on this theme and for this article.
I discovered I am autistic in my 40s. I am from the generation of masking woman clambering and clawing their way through life. I have had a lifetime of awful, grinding anxiety which I actively hide from others, except the trusted view. This hiding in plain site has been my effort to stay safe (not always successful, but more so now). Misdiagnosis in my 20s of psychosis and biploar means that I stay well clear of formal ‘help’. Reading articles, books and information about the internal experience of being autistic is a great source of comfort to me. You talk on this topic using the gravest of vocabulary and in the strongest of terms, thank you for your empathy, compassion and of course the tips which I will add to my arsenal of finding more peace.
Whilst we all have our unique stories and experiences, I am sure that my words are familiar! Anyways, just wanted to take the time to say thank you!!!