Life as a hedgehog

Autistic people are often described as having a spiky profile. This refers to our neurodivergent tendency to have great strengths in some areas and deficits in others. These peeks and troughs of functioning, be they related to social skills, self care, academics or anything else, can vary over the course of the day and/or lifetime depending on levels of exhaustion and sensory overload, previous experience and the environment that we are in.

Having a spiky profile can cause real problems when trying to access support as people can make assumptions and generalisations based on how they rate the particular skill they are witnessing. For instance, a person might perceive us to be intelligent and then assume we can’t have any difficulties managing other areas of life. Conversely another person might go to a supermarket with us and wonder how we even managed to get dressed that morning!

The same assumptions and generalisations also trip us up when trying to access support to help us manage living with DID. Having different parts means we have, what could appear as, a similarly spiky profile. For instance it would be perfectly reasonable to expect a 35 year old part to manage cooking a nutritious meal each evening, less so for a 6 year old. Which parts people on the outside are familiar with can influence their expectations of us.

As anyone with a disability will be aware, we are constantly having to ‘prove’ we are disabled ‘enough’ and eligible for support (financial and literal). Having a super spiky profile, which immediately conjures images of us as a hedgehog, can leave us feeling like we are loosing the plot. One minute we can do something, the next it would be dangerous or we can’t. We have two degrees but ask us to navigate a social situation we haven’t prepared for and we are at sea. Our resultant support needs are so variable that they are often underestimated.

In an effort to help the ‘gatekeepers’ of support to understand our needs we are encouraged to use ‘our worst day’ as an example. Doing this leaves us feeling like we are exaggerating, making everything up or lying – huge trauma triggers. Parts tell us to pipe down, stop drawing attention, that we won’t be believed, that we don’t matter, that we don’t deserve the support. We end up exhausted, ashamed, disgusted at ourselves for ever raising our head above the parapet and asking for help.

When, after making ourselves so vulnerable, the answer still comes back as ‘no’ our beliefs that we are not deserving are reinforced. We have to remind ourselves;
That the ‘no’ comes within the context of a Tory government that has been cutting funding to welfare services in the name of austerity for too long,
That it is the ‘no’ of a capitalist society that values productivity and independence over the human need for interdependence,
That it is the ‘no’ of a health service that appears to equate taking personal responsibility and being independent with success and recovery regardless of the quality of the life being led or the exhaustion and distress that surviving causes,
That it is a ‘no’ from people who just do not understand the complexity of living with DID and complex PTSD, let alone being autistic too.

It seems that the greatest barrier to the support we need, is not necessarily financial, but actually being able to have a human present to help us. It seems unfathomable to us that we keep being denied this support when we so clearly struggle to get through each day. You wouldn’t leave small children alone in a home to manage, even if an adult popped in and out – this is essentially what is happening to us, the response from support services however remains muted.

We have been told repeatedly that hospital isn’t the right place for us and that the alternative, support from the crisis team, wouldn’t be suitable either. To us this indicates that it is recognised that we have a need for support, but the solution we keep being given is
🥁 *drum roll* 🥁 ‘you are intelligent, you can do it, you need to take responsibility’ – there is nothing for you!

It is as if, because we do not fit the narrow view of what it means to be unwell enough to require support, the ‘gatekeepers’ seem unable to provide anything extra, unable to take a person centred approach and think with flexibility and creativity.

We have tried time and again to point out that nothing does not work, that they are leaving us destined to go round and round a cycle in which; we go into crisis, get told that the only support available is not appropriate for us, are shamed and shame ourselves into trying harder, become exhausted and unable to maintain what we are doing, before falling back into crisis. With each iteration the cycle becomes shorter as our ability to ‘brace up’ becomes less and less. Our pleas for support fall on deaf ears – after all the ‘gatekeepers’ can reassure themselves that we are intelligent, that we need to take responsibility, that we can ‘do it’ and have been ‘doing it’.

What they don’t seem to see, is the bigger picture – the cycle in and out of crisis.
What they don’t seem to know, is that telling someone who has used self reliance as a survival strategy their whole lives, that they need to ‘take responsibility’, just pushes them into greater extremes of the same cycle in and out of crisis.
What they don’t seem to understand, is that people are not designed to be independent, that interdependence and care are essential for life and living.

We can survive independently, but surviving doesn’t feel worth it the majority of the time and shouldn’t living be the goal anyway?