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?