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?

Change and the difficulties with acknowledging it

Change is ouchy and yucky. It means moving away from the familiar and predictable where I know what to do and what to expect. It means I don't know what will happen or how things will be. It means different, and for me, different and unknown is unavoidably tagged with unsafe. 

So if a change is happening I am automatically vulnerable, and my brain is telling me I am in danger. This is part of my autistic neurology not just a psychological conditioning that I can teach myself to think differently about.

A change in myself is extra problematic, because not only is the world unpredictable and unreliable, but I myself become so. For a while I am not who I am used to being, and I don't know what I think of the new version. Initially, different is almost always wrong (again neurological, not a conscious choice), so I must learn to accept the new version and whilst doing so any reminder that it is a new version increases the awareness of change and feeling of discomfort.

An unwelcome or unchosen change, or one I have no control over, feels even more unsafe, for obvious reasons.

So I like to keep my information safe, to be in control of people's perception of me, to have any changes I do decide to make firmly fixed in my head and adjusted to before they are presented to others.

When I tell someone a piece of information I am no longer in control of it. It is like a little bit of me has been stolen and I don't know for certain what will happen to it. It might get shared with more people, so I might get a shock if someone talks to me about something I haven't personally told them about (it may or may not be that I don't want the other person to know, but I certainly want to know who knows!). Or something else may happen with the information. If I tell someone I like stripy socks, they may go and buy me three pairs of stripy socks thinking it will make me happy. I might like the new stripy socks, but I did not expect them or ask for them and so they cause disarray in my mind. They might even be the wrong kind of stripes, or the wrong kind of fabric, or I might not have space in my drawer for any more socks, or I might have been looking forward to choosing myself some new socks when I had worn through some of my older pairs, but now I can't justify that because I have too many socks already. I must remember to communicate my gratitude for the gift in a neurotypically-understood way, and figure out whether I am to reciprocate in kind, or in some other way at some unspecified point in the future by doing a favour or giving a different kind of gift (which I must then remember to do!), or whether it would be considered strange or ungrateful to give a gift in return. This is a hypothetical situation but one that could happen to me, just to give you an idea of how even a simple piece of information can run away from me and cause difficulty, even though everyone's intentions are kindness and I might well like the socks!

Other people having my information brings all kinds of unpredictability. In addition to the issues above, simply the fact that they now know the thing in my head means that they may choose to talk to me about it at a time when I was not thinking about it, and that is unexpected and out of my control, which makes me feel cross, which is actually because I don't feel safe because things are out of my control and unpredictable. I find it easiest to talk about things or make changes or decisions when I am in control of them and they can't run away from me and take on a life of their own.

Changes and decisions take me a very long time to process. When I need a new phone, I start thinking about six months before my contract runs out "Soon I will have to think about what phone I am going to buy." I then need to look several times at what is available, over a period of several weeks (usually a month or two), ideally both in shops and online, before I am ready to make my decision, buy the new phone and change over to it. I thought about dying my hair for probably about ten years before deciding to actually try it, then for a few more months as I decided whether to really do it, when, and which shade to buy. It then took me about three weeks to get used to without being put out at my own appearance in the mirror. And the shade wasn't that different from my natural colour.

I tend not to consult other people until right at the end of this process, when I feel I have got my head round a change that is going to happen. I would rarely share that I am thinking of getting a new x, y or z, because somebody might get one before I'm ready and I hadn't decided which one I wanted. They might not get the one I want, or, because it takes me so long to think about it, I wouldn't know whether it was the right one or not - I am rushed into making a decision or someone making one, before my opinion is formed. And then I never like the thing because I never had the opportunity to decide whether I liked it. Once I am mentally adjusted I am a little more able to cope with other people's responses. I didn't tell anyone I was hopeful of a relationship with Mr Peggy until we actually got together. I probably won't discuss the names we are thinking of for baby until baby is born and we have decided on a name. It helps me keep ownership of the decision and feel as though I belong to the new version of things.

But because any change has been such a big mental shift, it can still make me feel unsettled when people comment on a change, because it highlights in my head that it has occurred and even when the change is a positive one it still carries a quantity of discomfort in its newness. To have people comment on a change in me makes me feel vulnerable. Perhaps because it points out the me-ness in the change - I have made a change based on a personal decision or preference, other people will see part of my personality and then be able to judge me on that. 

So sometimes I don't make changes. Often I have no desire to make changes - sameness is very happy to many autistic people. If I do make a change sometimes I don't tell anyone about it, or I hide it. The final line of defence is to head off or disarm the worst of the discomfort by getting in there before anyone can comment on it. Tell everyone about it, make a joke about it, out it before someone else can, before it's out of your control. You still have to deal with all the problems I explained before about people knowing the thing, but at least their finding out was under your control.

Changes happen when you are pregnant. For quite a while you can hide them. I told people before it became unavoidable so that it was in my control. But you can't control when people start seeing or commenting on your bump. In pregnancy it is suddenly not only acceptable but lovely and wonderful to talk about your body size and shape and CHANGES that are happening. But I am still adjusting to those changes and I don't have the luxury like when I'm going to dye my hair, of not telling anyone until I am ready to. They can say what they want when they want, and they aren't being horrible, they are excited just like I am (OK, the only person who can be as excited as me is Mr Peggy, because it is after all our baby! But they are still excited.) and most people like to talk about that kind of thing. But change for me is always uncomfortable, even when it is the best kind of change in the world, like having a baby that we have waited so long for (and I know for sure I'm not the only one who isn't always happy as Larry about everything that happens during pregnancy).

The best thing you can do? Ask me factual questions, ask me how I'm coping with pregnancy or what the best and worst things are for me at the moment, tell me lovely stories (not horror stories!) about moments you treasure from pregnancy or your children's early lives. And with general changes, a comment that acknowledges the change but doesn't focus on it can be better for me than an outright, "Oooh, you've had a haircut!" (This is one reason that I haven't had a haircut for five years. I never have to have that conversation. What am I meant to say to that? "Um, yes, that is true, clearly."). Or maybe what I'm thinking is to be specific rather than general. I prefer a conversation that is about something... where the response to what you have said is logical not something I have to dream up. Maybe pick an aspect rather than commenting generally. "I like the colour," with no preamble, rather than "Have you had your hair done, ooh it really suits you." This is similar to how I don't like greetings and would rather just enter straight into a conversation. Or say it indirectly to someone else in my hearing: "I love Square Peggy's new hair!" When it comes to acknowledging change I think for me it links a lot with Exposure Anxiety, and the types of approaches that work well with this and PDA can be helpful - indirect communication. See this post and this one for a little on this, or Google. But perhaps these are points for a discussion on neurodiverse communication tendencies!

Basically, a long old ramble to say change is hard, acknowledging change is even harder, both of these make me feel unsafe and like the world is falling apart or bits of me are being stolen. You can help by asking questions that I know how to answer instead of making comments which can leave me feeling almost violated, and by being specific, or by talking indirectly about things.

Inclusion Makes ALL Lives Better.

Inclusion and accessibility are variably seen as either unnecessary expenditure, feel-good or philanthropic add-ons or important ways of levelling the playing field so that everybody can have meaningful participation in the things they want to do and the places they want to go. Depending on how much value you place on a life that is different from yours...

What is sadly overlooked in all of these views is the benefit that these adjustments also bring to the lives of people who don't have barriers in the way of accessing the opportunities they enjoy and/or need. I have seen occasional articles pointing this out: for a starting point you could try Joanna Grace's TEDx talk here (less than 15 minutes) or follow her on social media as she frequently explains much better than I can the myriad reasons why and how inclusion benefits everyone and not just those it is "aimed at." Or have a chat with me and I'll ramble at you about it!

I just felt like highlighting this again today after a soul-warming conversation I had earlier. I consider myself incredibly fortunate to have both a mental health team and midwife who are thoughtful and responsive and keen to work in an inclusive way, making adjustments to support me so that I receive care that is as beneficial to me as possible. I truly believe that this makes a daily difference to my wellbeing and ability to cope with and enjoy life. A current part of this work is creating a plan to reduce my anxiety and distress around accessing the hospital where I will likely be giving birth and may need to visit for antenatal care. I was discussing with a member of my mental health team some proposed steps in this antenatal plan including pre-recorded and live videos as preparation for brief non-appointment visits. 

And then came the conversation: "Well, wouldn't that [pre-recorded tour] be useful to a lot of other people as well?" "Couldn't they make it available to everybody?" and even better, "Is that something that would be useful for our service to do as well?" 

Yes, yes, and yes! Especially during these restricted times where visiting places is not routinely allowed and people are encouraged to stay at home unless there is very good reason not to, I can't think of many people who wouldn't find the availability of a photos or a video tour or street-view style navigation useful and anxiety-reducing. Birth can be a stressful and anxious time for many people with or without additional difficulties. And likewise pretty much everybody attending an unfamiliar mental health service is going to experience high levels of anxiety which may be slightly reduced by knowing what to expect visually when they arrive. Many venues began to create videos when they reopened after the first lockdown, to explain their covid-secure measures, and I have heard countless reports from friends who have found this really helpful. How fantastic to have professionals around who think one step beyond what you have said and constantly reflect on potential wider implications - the people who truly listen and seek proper understanding are the ones who make strides in care not just and not least for specific patients but also for wider best practice.

Adjustments and accommodations made to make care and environments more accessible and inclusive to me as an autistic person don't just benefit me. Because my needs are perhaps more overt in some areas than other people's and I am fairly aware of them, I can actually help make things better for the general population. With the help of the people around me who have great ideas and are willing to put in the extra work to support me, we can speed up improvements of systems that will help everyone and might otherwise have taken much longer to come to light.