Is it OK that Everybody's Toolbox is Different?

Somebody that I know has been thriving in a setting that is fairly new to them. It is a very controlled environment with minimal disruption to routines or unexpected occurrences, and a limited number of people, nearly all of whom are known and only a few of whom are regularly in the room. There is little change in the sensory environment beyond daily variations caused by weather etc. This person notices any other changes very quickly on arrival into the room and discusses them to help them process the difference. When the person is tired they are easily overwhelmed by sensory stimuli or mishaps, but generally they manage well and thrive in the setting, developing skills rapidly and displaying positive signs of good wellbeing. 

Masking serves a protective
purpose but is harmful

Life at home has improved too. More dysregulation is seen than in the setting (Home is a safe place and it is completely normal for more distress to be expressed in the home. Where the distress is displayed is often not the same place as the place that causes the build-up of stress.), but markedly less than before spending time in the new setting. This means the improvements seen in the new setting are likely to be genuinely benefitting the person rather than them masking until they get home and then experiencing even worse distress.

The situation that is causing most difficulty for this person at the moment is going out and about in the world. In the new setting and at home independence skills such as walking and managing their own levels of sensory tolerance (eg. asking to wash hands before sensations become completely overwhelming and lead to meltdown) are really coming into their own and meaning this person can access many more of the opportunities they want to in the way that they want to, but it's frustrating for them and upsetting for those spending time with them that this isn't working in the community yet.

The noise of the street has been raised as one issue that may be contributing to their overwhelm and dysregulation when out and about and my first go-to was to wonder aloud whether they would benefit from trying ear defenders. The initial response from another person in the conversation was hesitant. "Hm... but we wouldn't want them to get overly dependent on them and not learn to cope. They might just wear them all the time because of the novelty factor."

Now, ear defenders or noise cancelling headphones are not a simple fix. Some people find the physical sensations of having them on their heads worse than dealing with the sounds. They are more effective for dulling certain sounds than others so their usefulness depends somewhat on which sounds are bothersome. So they may not be useful for this person anyway and I'm certainly not going to enforce something that doesn't benefit a person. But at this point I was simply thinking allowed about offering an opportunity to try them out in case they did help, and the initial response surprised me from someone who is enormously caring and only ever wants to bring benefits to people's lives. 

To begin with it bothered me and I felt cross that they could be so cruel and potentially deny someone something that might help (the person described wouldn't be likely to have this idea themselves or the possibility to source the resource) because in their view using ear defenders would be a negative thing. Then I had a word with myself and realised that this was not the intent. I know this person and they have no malicious intent. They want to help, but they are uninformed and I might be able to help them to see a different perspective. 

The beauty of a good working relationship and reflective people who genuinely want the best is that we can have these conversations and we are willing to change our opinion when we are shown new aspects of a situation that we weren't aware of. 

New skills and resources are so much fun!

I pointed out that our friend does definitely overdo things on the novelty factor but that it only tends to last a couple of weeks. When they learnt to drink out of an open cup with a straw they drank excessively for two or three weeks, but this soon regulated itself to a normal intake with little to no input from those around. 

And what I hope I remembered to convey is that tools and aids are called tools and aids because they do just that. They help. They mean you can do more than you could otherwise. Just because someone can walk short distances sometimes doesn't mean that they should never use a wheelchair if it means they can access places where they can't walk the distance, or where they can stay for longer because they haven't used up the energy walking. Using a wheelchair to get around a shopping centre might mean they can get out in the shops to look at the items, and that they can visit more shops than if they were walking. And anyway, if someone needs to wear ear defenders 24/7, why shouldn't they?

"Learning to cope" is a dangerous phrase. It usually translates to "learning not to outwardly show distress." And if that "learning" has ever happened to you, you will know how dangerous it is. Sensory issues can change over time but far more often the distress is simply transferred. It may well be internalised, meaning immediate distress is not seen but building higher levels of background stress and lower tolerance to triggers: more meltdowns later. Sometimes there is shutdown instead of the forbidden meltdowns (these are just as distressing for the person, but don't tend to bother others), or people learn to dissociate, or self-harm in a hidden way to cope with the overload. The damage to a person's identity from learning that who they are is not acceptable leads to mental health problems that may or may not display in typical ways. The exclusion from activities and settings that they could enjoy and benefit from with a few simple accommodations is not only a shame and a sad thing that people are missing out. It is a disgrace if there is something we knew we could do or offer (or allow others to do) and we don't. 

You wouldn't deny someone sunglasses at the beach because if they just went without then they'd learn to cope. You know that not wearing sunglasses wouldn't kill them, but you also know they will enjoy their day more if they are wearing them. 

Would you tell a short person they should really be able to manage without using a step to reach something on the top shelf? Would you refuse to let a dyslexic person use a colour filter to assist their reading and tell them they will manage in the end without it?

Aids used by people whose brains use more space to deal with input or tasks are exactly that. They make life easier, they make tasks quicker, more comfortable, more enjoyable and allow people to do more of what they want and need to do. They do not signify laziness, a desire for attention, or weakness. They are tools used by resourceful people who are actively trying to participate in their own lives in a world where that is more difficult for them than for other people.

Everyone uses tools, it's just that you're used to seeing sunglasses, dishwashers, cars and scissors. Next time you see a tool in action that you don't use, instead of writing it off as weirdness, laziness or weakness, have a look at the function it provides and see if you can imagine all the different benefits it brings its user. 

Some tools seem to bring judgment on their users, and it isn't right.

Edited to add: Variable Conditions

This happens all the time to people who use different tools from "the norm" and to people whose conditions vary (think of the wheelchair example above). If someone doesn't need an aid all the time, it still doesn't mean they are being weak or lazy or demanding attention when they do use it. It simply means they have greater need of it at that time.

Even in a special school where we should be helping people find skills to regulate their own internal state in whatever way works for them, I see judgment of using tools and aids worryingly frequently. Talking is somehow "better" than using AAC (alternative or augmentative communication, eg. text to speech apps, writing, Picture Exchange Communication System). If you can talk suddenly it may be frowned upon to use a different method of communication even though they've been teaching you to use it for years... And you can say more with your AAC... And you can say it with less stress with your AAC... Surely communication (and thereby increased wellbeing) is the goal, not speech?

I'm here to say, as a generally verbal autistic person with relatively low support needs and a largely independent life, these things matter. I am non-verbal at times. Just because I can talk most of the time doesn't mean I always can. And even when I can, it doesn't mean I can say what I need to say or that it's my most effective communication method. In therapy I have used writing at least as much as I have talked. In some situations eg. shutdown I use a bit of signing, or flashcards or write a note. It gets my problem solved, which I wouldn't be able to do verbally. The more tools we give people to put in their toolbox (and support them to be able to use them), the better equipped they are to fix problems and to build things they enjoy. Why wouldn't we?

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html

Happy 6th Birthday!

I realised today that this week marks 6 years since my diagnosis and due to a conversation I had during the week I thought it might be a good opportunity to think and write about what my diagnosis means to me now and how that has changed through the years.

This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in:  

1. Social Communication
2. Social Interaction
3. Flexibility of Thought
4. Unusual Sensory Experience

And there we have it. Just like that, I was autistic. The report was nine pages long, and reflected a little more deeply on the details but that's the bit that says it, that changes my categorisation as a human being.

Of course, it doesn't change who I am and always have been one iota: the sentences following the one above declare that "The information provided by [Peggy] and her family indicate these difficulties have been present from a young age. Over time, she has developed a wide range of impressive coping strategies to manage her difficulties in social communication and interaction - often masking the degree of these difficulties so that others are perhaps unaware of their impact."

I consider myself lucky that the process and the report were smooth for me, and the approach very balanced: both the difficulties and the benefits of being autistic were highlighted and addressed in terms of their pertinence in my own life. Reading stark facts like the quote above can feel jarring, but they were given in a context where care was taken to specify my strengths and potential alongside; a lesson that I hear could be applied elsewhere. I wrote a little about the lead up to my diagnosis and initial reactions in my first ever post on the blog, Officially Square.

That post was written nearly three years after my diagnosis and at that point there were very few people party to that information about me. Three family members, my fiance, two friends (I think... or I may not have told them by then) and two or three colleagues. I didn't publicise my blog in case someone figured out that it was mine. I swore everyone that knew to secrecy.

From this behaviour you would be forgiven for thinking that I was ashamed of my diagnosis. On the contrary, I was hugely relieved and mostly very happy to receive official confirmation of what I had suspected for the previous three years. It made sense of my struggles since childhood (that I had obviously failed to share with anyone because, you know, social communication...), my different experiences of the world and my differing needs. I'm not wrong, I'm just a different kind of person and sometimes I need to live a little differently, and that's just fine. In fact, it's good in many ways. I can understand myself better now, work with my strengths, learn ways to cope with my difficulties (still working on that!!) and explain myself to others with more confidence and accept my differences with self-compassion (sometimes...).

So why was I so adamant that nobody find out? One reason was that I was terrified they wouldn't believe me and would think I was making it up either as an excuse or to gain attention. As pointed out above, I have an impressive array of masking strategies, so to disbelieve my diagnosis is in a way complimentary to my efforts, but it would also greatly invalidate my hard work and times of intense distress. I wasn't confident enough at that point to defend my diagnosis because it still didn't feel quite right that I really qualified to be described by the criteria above. Six years of self-observation leave me rather more convinced. Along with the fact that not a single soul has challenged the diagnosis, though many have shown surprise.

I also worried that people would look at me differently once they knew. To a certain extent this still applies. Perhaps not so much as a worry, but I like to choose when and whether I disclose. I worked for my mask and I usually still use it when I meet people because I don't want their impression of me to be formed by their idea of autism; rather, I want to inform their idea of autism. I am me, and me is autistic, so this is one way autism can look. Not, she is autistic so she must be [insert characteristic/behaviour here].

As time went by and I gradually needed to inform more people (changing jobs was the main catalyst for this) I discovered a pretty much universally positive reaction to disclosure. My first experiences weren't just a happy coincidence, but most people find it interesting and useful to find this out about me (assuming we already have a positive relationship), and it helps them to be considerate of things that I find really difficult. 

So nowadays I don't hide my diagnosis, and I tend to mask less. I don't wander round telling people just for the fun of it and there are still more people who don't know that do know, but I can talk about it as a normal part of conversation and this has been helpful in many ways. I accept myself and my needs because I understand why I am how I am. I am becoming more confident in saying I'm not going to do things because I know they will make me unwell or increase my stress levels, and I don't have to be the same as other people in order to be a worthy member of the human race. If something is bothering me I'm more likely to verbalise that now, and even if it doesn't change the situation it helps my internal state. I will engage is certain regulatory behaviours in some public or social situations because I know those people won't bat an eyelid because they know me (there are many others I still keep private). Because I have shared, my colleagues can help me when I'm in crisis, and they can help prevent me getting to crisis.

Was it worth seeking a diagnosis for something I already pretty much knew? For me, yes. And even more so than at the beginning. Personally (and this is not the same for everyone), I could not have assimilated autism into my understanding of myself without a formal diagnosis. I needed that to begin to accept that I genuinely have a reason for what I now know are my autistic traits. I'm not just wrong or weird (although I am pretty weird!). I can get the support I need at work, which I wouldn't necessarily without a diagnosis. I understand and therefore accept and can help myself so much more than I would be able to without knowing this about myself, and I can help others help me too, and I can broaden their world by exposing them to people whose brains work a bit differently. 

Am I proud of being autistic? Not particularly. Am I ashamed of being autistic? No. I just am. Would I be proud of being 5'7"? Or ashamed of having size 6 feet? These are all just thing about me and knowing about them helps (imagine trying to buy shoes if you didn't know what size your feet were. It would take a lot more effort!).

Happy 6 years.

Please ask if you have questions about my experiences pre- or post-diagnosis - I feel like I haven't quite managed to capture everything here and different nuggets will be helpful to different people at different times :)

Stigma: Mental Health Awareness Week 2019

I thought I'd address stigma as that is obviously one of the main aims of Mental Health Awareness Week: to get people talking and reduce stigma, to remind people that "people with a mental health problem" are just people (most of us will experience some aspect of trouble with our mental health at some point in our life), to help reduce feelings of shame and isolation.

As I pointed out earlier, I write about mental health on here because it is something that closely ties in with my autism and a large part of my life recently has been managing these. I consider myself pretty understanding of issues concerned with mental health, I try and educate myself on how different aspects affect different people, I try and be a good friend. I will happily fight for other people's needs and increasingly voice my own on occasion and I will shout (metaphorically) about whatever is needed to reduce stigma.

So what should I post as a special for Mental Health Awareness Week? It would be appropriate to write a big reveal of my whole mental health story, of a condition that desperately needs people to do just that. But it turns out I, the inclusive, mental-health-aware person, have too much stigma. I still have too much shame to tell the world the less palatable truth about the ins and outs of trying to live with and recover from my particular brand of Brian. It's fine if it's someone else, but the fact that I can't own up to my own truth displays a level of stigma I don't care to be associated with.

Because I like to make people happy and to reinforce to myself the positive aspects of life and recovery I tend to make sure I end on a positive when I'm writing: the positive coping strategies I've used, the fact that it's OK to have difficult times, the silver lining to the cloud. This is a good thing, and it's important to highlight hope because it saves us, but it might leave you with a false image of me as a super-well-adjusted person winning at living with and recovering from mental health problems. I still have shame. I still cry on bathroom floors. I still use bad coping mechanisms. I still hide, so this is a bit of a non-post really.

But in usual style I will come round to the positive at the end. My new GP gave me a beautiful nugget this week. She is fab and seems intent on supporting me as I carry on post-discharge. She asked about things I do to help when I'm having a difficult time and I ended up explaining as I have to many people before "I am the queen of positive coping strategies. I have them coming out of my ears (metaphorically). And yet we're still here".

And where would you be if you didn't have them?

Hm, touché my friend.

(I'm pretty sure others have pointed this out before - my favourite Welsh Peggy for certain! - but for some reason it hit the spot at that moment). It still leaves me wondering where to go when I've used every tool in the book and still need the oh-so-effective maladaptive strategies, but at least I have strategies to get me this far. And re. my last post, just because I'm where I am right now doesn't mean I will be forever.

Maybe I'll tell my story another year.

Accepting Today

Different days are good for different things.

Just because you can’t do something today doesn’t mean it will always be like that*. When I feel like I can’t do something, I can’t imagine ever feeling any different about it: it is absolutely my truth. But that’s not true. I am finding that if I let myself not do the thing, there often comes a time when I feel able or even willing, to do the thing. That time often comes far sooner than I expect, and I suspect it is related to accepting my needs in the moment and giving myself the freedom to do or not do as is best each moment.

The more I pressurise myself to do something, the more I cannot do it. It is more than resistance I feel: an impossibility. I am scared, feeling almost literally petrified - if I must do the thing, there is no way out, no option or safety net if for some reason I fail. I get caught in the dilemma of “I can’t do the thing and I can’t not do the thing” and this is when my brain implodes and off I go into threat system (fight/flight/freeze - I am a freezer, hence “petrified”). Acceptance is an exit from the dilemma that leads to crisis.

Actually it turns out that whatever I can do today may not be the same as what I will be able to do tomorrow, and it may not be the same as what I could do yesterday.

And that is OK.

Some days I can use all my
tools to make a moment of OK

Some days I can’t talk but I can write. Other days I can seek out a friend to help me.

Some days I can read but I can’t think. Some days I can think but I can’t read!

Some days I can’t stop thinking but I can dance.

Some days I can’t dance but I can wrap myself in a blanket.

Some days I can’t eat; other days I can’t stop eating. Some days I can be balanced.

Some days I can’t leave the house but I can support a friend over the internet.

Some days I can push myself; some days I push too far. Some days I can show myself compassion.

And that is OK.

Some days I can play upside down!

Every day (and moment, because these states rarely last a full day!) is different and every day is a part of my life that I can choose to accept, whether or not it’s what I hoped or planned for. When I choose to accept my truthful state of being regardless of how I might be inclined to judge it and of how it looks to other people (Although please take note - it really does make a difference if those around you are accepting too. It is an exhausting fight to accept the unwanted sides of your life), I tend to have a better state of wellbeing and a higher probability of positive change.

I dare you to give it a go: try being kind to yourself instead of beating yourself up. Cut yourself some slack, listen to your body and believe what it tells you for once - it may just be right.

*A couple of disclaimers here:

1. I am purely talking about psychological “being able” to do things here: having limits to physical ability to do things is another matter entirely and probably approached in a completely different way. Sometimes my psychological “not being able” to physically stops me from being able to achieve the activity; other times I could theoretically do the thing but I know that it is not a good idea to. I am working on categorising this as a “can’t” to combat the very powerful “should”s in my Brian!

2. This does not mean that I never challenge myself, that I “let myself off the hook”, stagnate or gradually shrink my life to a sad place, although I do sometimes miss out on things I would like to have done. On the contrary, experience has shown me that through accepting when I can’t, I actually have more occasions when I feel able to do more than expected, or I feel more able to take those opportunities or risks because I know I have a safety net or an option for “failure”. I am also more likely to enjoy and be successful at the things that I do do. I am more likely to push myself on the things that matter rather than indiscriminately spending my efforts trying to do everything including things that are potentially damaging, or bring difficulty with no benefit.