I have realised that my phone is a pretty good representation of my energy levels.

When I do things, my energy levels go down a lot faster than they used to, and I need more down time.

This could be as simple as having a nap during the day, or a longer lunch break. There are times when I need days to recover from activity.

If I have something on in the evening, I need to be able to have a slow start the next day. That means not starting before 10am (early appointments are an absolute no on those days).

This is also something I need to consider in any pricing structure for what I do. I can’t have back-to-back meetings with clients, they need to be spaced out, this means I have to take this into account with what I charge. For example, I can’t have three one-hour clients between 9am and 12 noon. If I do this, I will burn out. Instead, I could have two with a break in between.

I used to think there was something wrong with me not being able to work constantly like others seem to be able to do. I now know this is simply how my body operates.

Part of me accepting my ‘new normal’ and working with my brain is realising that I need plenty of recharge time. I need that time watching mindless shows on TV and doomscrolling, or taking a long shower, or simply not being ‘productive’. This is not a ‘nice to have’ it is an absolute need.

I am still learning how to embrace it, bring it into the everyday, and make it work for me instead of doing everything to work against it.

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I feel you are letting me, and others like me, down, mostly because we don’t fit in with your understanding of who an autistic person is, and what they need.

You see, I have had a lifetime of learning skills to fit in with the role society has set for me, as a woman, a mother, a housekeeper, an employee, or any other role I’ve been expected to perform. Among the reasons it took until I was 44 for anyone to notice that I’m autistic.

I have done the courses and programs for social skills, meal planning, parenting, job skills. I mastered many of them, however they didn’t make life easier for me. If anything, they made life harder, leaving me feeling broken and a loser because these programs didn’t do what the promised, they didn’t make life easier.

Instead, these programs helped me slide in to burn out, and reduced my capacity to function. Right now, I feel like I’m in an eternal state of burn out.

Over the years, my cries for support have been ignored or rejected, and this has contributed to my reduced capacity to function.

I live in survival mode. In burn out.

And no one is listening.

I put on a mask that I’m capable, and if you look at the surface, it looks like that is what I am.

However here is the reality.

I have no choice to operate like this. If I don’t cook, we don’t eat. If I don’t earn money, I can’t pay the rent.

I have raised two children with minimal supports, while in burn out mode without knowing that’s what it was, and this has had a major impact on my family.

I don’t need more classes on how to manage a household or ‘social skills’. This will not help.

I need practical support so I can recover from burn out. I need to do less things, not more. I don’t need to be treated as if I don’t know how to do anything. I’ve had a lifetime of building those skills.

Instead, I need to just not.

I need to learn how to not fight with my brian.

I need supports so I can thrive, not just survive.

I need someone else to do the doing and the caring for a while so that I can rest.

For me, to build capacity again, I need to be able to rest and recover.

Instead, I am offered more classes, more therapy, more appointments, and the sorts of supports I actually need are either ignored or denied.

I am a highly intelligent, high masking, autistic woman who is 46 years old. I don’t fit the box of what so many understand what autistic ADHD individuals are like. I need supports that are tailored to my needs, not the ones that fit the box.

Thank you for reading this far, and if you are a support organisation who would like more about this, I would be happy to talk to you more.

The post To Autism Support Services appeared first on There's a J In there... Somewhere!.

So many programs seem to fall under ‘capacity building’ which is a NDIS term with the goal for supporting the participant to no longer need the supports. They also include things such as ‘social skills’ classes that teach participants how to look someone in the eye and behave in a way that is considered ‘socially acceptable’.

There are few places where we can be ourselves, or are encouraged to be ourselves.

After I was diagnosed, I wanted to learn more about my brain and how to work with it instead of against it. Most things I found were around encouraging me to work against my brain!

I even had someone tell me that, in order to get more support with housework, I should clean when the cleaner came, so I’d get twice the amount of cleaning done! Body doubling wasn’t what I needed, what I actually need is for some things to be taken off my shoulders…

I really hope things change so that more programs exist to inspire ND people to work with their brains and to just be who they are. While I’m waiting, I’ll continue my writers groups that inspire people to just be, rather than change what makes them amazing.

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