Applying for PIP as an Autistic person

Emily Wooden shares a frank account of her difficult experience applying for PIP as an Autistic person, and how it forced her to confront some challenging reflections around masking and identity.

The majority of my struggles as an Autistic woman go unseen. I’m able to mask in front of other people, so much so that I’m often met with exclamations of shock and disbelief upon finding out that I’m Autistic:

I never would’ve guessed

You’re so sociable – well done!

You don’t seem Autistic

You must have the mild kind

Sometimes, these reactions are welcomed, as I always want to fit in with those around me. However, I also feel conflicted and hurt. The parts of myself I show to the world are the filtered parts, the parts where I’ve cropped all of the “obvious” Autism out to become more palatable and “normal”. I’ve spent hours staring at myself in my bedroom mirror practicing facial expressions to make sure I have the perfect face for every social situation. I have a list on my phone of conversation openings, responses and follow up questions. After social interactions I’m often so burnt-out that I can barely leave my bed. When someone tells me that I don’t seem Autistic, all I can think is…if only you knew. This is why a lot of Autistic people find it hard to reach out and ask for help, because the world makes us believe that we don’t need or deserve it.  

A year ago, I applied for Personal Independence Payment (PIP). It wasn’t an easy decision; for years I believed that I did not deserve any help. I went through a gruelling investigation into what I struggle with on my very worst days, which isn’t easy to talk about. I’m often filled with shame about these aspects of myself and so, putting it on paper in excruciating detail, was mentally, emotionally and physically draining.

I wrote about how I rarely have energy to prepare food for myself, and how this leads to missing one, two or even all of my meals for the day. I wrote about how this is exacerbated by ARFID (Avoidant Restrictive Food Intake Disorder) and my inability to tell if I’m hungry due to poor interoception. I wrote about how executive dysfunction often prevents me from showering, brushing my teeth and taking care of myself. I wrote about how it is very common for me to spend the entire day without dressing or leaving my flat. I wrote about how I often miss out on appointments, activities and university lectures due to debilitating anxiety, lack of energy and the inability to leave my room.

I received a response in the post around a month later. I wasn’t feeling optimistic, knowing how difficult the process was, and I was prepared to appeal. What I wasn’t prepared for was to be told that I had no difficulties in any area of my life whatsoever. For each element of my application, I scored 0 (meaning absolutely no assistance needed). On top of this, I read through an examination of my application, dismissing every single struggle that I’d mentioned and ultimately ending with, “I decided you can manage these activities unaided.”

That evening, I had a meltdown. I was unable to move, speak or eat for the rest of the day and the next day I was unable to get out of bed. At times like that, I often judge myself harshly, dismiss my feelings and get angry at my body and mind. Reading that report was like reading a confirmation of every negative thought I have about myself.

I appealed the decision. Again, it was rejected in the same, dismissive way and, again, I was crushed. So, then I had a choice; do I keep fighting for this or give up? This is the point in the story when I should be able to tell you that I never stopped fighting, that I finally made them listen, that no one should ever give up and that I’m living happily ever after. I wanted to keep fighting for myself, for all the Autistic people who are entitled to help, and to try and correct the flaws in the system. But I gave up. I’m too exhausted and frustrated to keep arguing with a system that has no desire to support me. I’m still so angry about this and one day I hope that I can summon the energy to go through this process again, and win.

I originally wanted to write an inspiring blog post to encourage and inform people, to write about overcoming challenges and give you insight into my life. But this is the reality for too many Autistic people – the struggle to make our voices heard, fighting for our rights and constantly being told that we’re not worth it. I want the system to change, and I want to help change it. But for now, I’m tired, and I’m going to have a nap.