Welcome to my series Disability Profiles, where I interview people from all walks of life so you can gain a bit more insight into what it’s actually like to be disabled, neurodivergent or chronically ill. My aim is to help dismantle the stigma of difference, to wipe away pre-conceived ideas, to open minds to the fact that being successful and happy means something different for everyone.
Hi, my name is Sara. I am 30-year-old female who lives in Norfolk, United Kingdom. I was born in Aveiro, Portugal. I work in one of the best universities in the world, as a data expert in cardiovascular research. I am a huge nerd who loves Star Wars. books, activism, and animals. I live with my two cats and my partner.
I identify as autistic and disabled. I have moderate hearing loss and I wear a hearing aid, and I am currently in the process of the diagnosis of ankylosing spondylitis, an auto-immune disease that causes inflammation on the spine and joints.
I was initially self-diagnosed as Autistic last year, and once the pandemic calmed down, I had the official diagnosis done in Portugal, in the private healthcare. My mother attempted to diagnose me when I was 6 years old, but the psychologist said I couldn’t be autistic, since I “had friends”.
Do you use mobility aids? How has your experience been with using mobility aids?
Not yet, no. I do limp sometimes because of the deep pain in my back, but since I am now awaiting the official diagnosis, I don’t have any help.
How was the diagnosis process for you? Was it quick and easy or long and drawn out?
It is still ongoing in a way. In Portugal, I got the Autism diagnosis via private healthcare system. However, in the UK, where I live, I am still awaiting to be added to the waiting list to be assessed (and once I am on the list I will have a waiting list of 2 years). Doctors continually say different things, including that I am “too functional” and do not need a diagnosis. I have severe and debilitating anxiety and alexithymia, and need the diagnosis to access therapies and help, something that I can’t do properly until my diagnosis. I find quite disturbing that the healthcare system is ok for people to be functional instead of healthy and ok. The private healthcare for Autism is too expensive for me (it costs between 1/3 of my monthly wage to a full monthly wage).
In terms of my chronic auto immune, I’ve been in the doctors since I was 17 complaining of deep back pain that gets worse when I rest, and until now they only told me to take paracetamol. I had a family case of ankylosing spondylitis (it is highly genetic), but none proceeded with the diagnosis. Even now, they do not refer me or put me on the waiting list unless I have something on my medical tests (they are pending).
It is deeply frustrating and invalidating to keep having to fight the healthcare system for recognition every step of the way. Currently I have severe flares of pain in my lower back, neck and jaw, but they still doubt me. I must still have ONE doctor that believes me and fights for me.
Knowing about my condition allowed my family and friends to understand me and to be more tolerant of my autistic traits. Growing up I had a tough time. I had a strained relationship with my sister and stepsister, since they believed I was too rigid and didn’t liked to spend time with them, and my step-father was continually reprimanding me for “not acting properly”, for example, for reaching for food, before the older people get served first. It did not make any sense to me since there was enough food and I never really followed those types of rules, or simply didn’t knew they existed.
I had several friendships that disappeared due to me having trouble communicating and looking “weird”, and several cases of bullying where I didn’t realize until later I was being mocked.
In terms of relationships, I had an abusive one when I was 15 years old. Having someone that liked me and integrated me in a group, made me go for a relationship with someone I didn’t even particularly like. With my alexithymia I ended up not noticing all my sense of discomfort and because of my lack of social skills I could not see the red flags. It was deeply scarring, and I had PTSD for years after, until I went through years of therapy.
Now, I have some close friends, and knowing about my Autism helped me to fix some relationships in my life. I also found an amazing partner who loves me for who I am.
I think the fact I now fight for my own validation helped me unmask myself a lot more, making me happier and healthier, and more prone to keep the relationships that truly matter to me.
My biggest special interests are Books, Politics and Activism (disability, feminism, LGBTQ, anti-racism), and my passion is to fight for a more diverse and equal world. I am now starting an association in my birth country (Portugal) to fight for inclusivity and integration of autistic people. All organizations have a very medical approach to Autism, while we want to bring a pro-neurodiverse and social approach, where we support the unmasking and full acceptance of who we are. I also run a blog www.datactivism.com where I try to gather data on several issues and share my experience. My favourite way to spend my day is having my two cats with me, a weighted blanket on my legs and to read a book. I also love the sea and wildlife, so anything with animals makes me happy. I volunteer in an animal sanctuary, and I’m always happier when I go there. It just lifts me up and fills me with love and energy. I also love animal photography and going deep into the forest and photographing them and watching them from a far just makes my day. It feels like I am watching a very kind part of the Universe in a way. As an autistic person, I struggle with social connection. I struggle a lot with social cues and going out with friends. I have sound hypersensitivity so a lot of people talking at the same time is very distressing and makes me confuse and tired. I never understand facial expressions or social etiquette and even while masking I feel awkward and weird. Also, I had a burnout in the beginning of the year, because of how much masking I did my whole life, and it completely burned my resources and energy. I have severe anxiety that gives me headaches and stomach pain that only now I am receiving treatment for.
In terms of my chronic illness, it is pain. There are days where I must limp because my spine is so inflamed that locks all my nerves until my leg, and my jaw gets so inflamed that it dislocates, and I get lockjaw. I also get so much pain in my neck that I can’t sleep.
I have hypersensitivity to sound, and a noise-cancelling headphone is my best friend. I avoid using the hearing aid since using it triggers my hypersensitivity and gets me overwhelmed much quicker. However, I have to use it at least in meeting and social occasions since I have a lot of trouble in understanding speech. It is a paradox that I have not managed to find a solution yet.
I am hyposensitivity to smell and touch, so I constantly seek touch and nice smells. I love crunchy food and petting my cats.
My favourite stim in the world is touching my ears and folding them. I have it since I was a baby, and it is so satisfying and such a happy stim. I also put my hands in front of my nose a lot, even sleeping. My own smell helps me block out others. Specially when I wash my hands with nice soaps.
I absolutely love being autistic. Yes, it has a lot of challenges, but I wouldn’t trade them for anything. I am a very rational and intelligent person, and I have a gift for seeing patterns and details others can’t. I collect data from the world, that helps me process what goes around me. I am also really good at analysing who am I as autistic and disabled, and connecting my experience, difficulties, potential and society expectations into reflective ideas through writing. All these abilities allowed me to follow a career in data and to be able to share my experience with others. I also have a different view on energy than neurotypicals and non-disabled people. I use my energy for things that I really care about, and do not waste time in superficial situations without content and purpose, since I only have a specific amount of energy to spend. Most of the world have unlimited energy and spend more time in making sure they fit society than changing it.
What stereotype or trait do you not relate to? I have a best friend since I was in high school (found out she was autistic at the same time as me). I love to cuddle and to hug and be with my partner. There is still the idea that autistic people are in their own world and they are “non present”. That is not true at all. We might have dissociative episodes and shutdowns/meltdowns, but besides that we are hyper connected with the world around us. I write and have a very concise and intuitive voice that analysis the world in a very different way. I am so happy and giggly and funny, and love to dance and laugh. Autism is portrayed as a tragedy, but I think society attempt to make us look neurotypical and fight against who we are is what makes us depressed and struggle with mental illnesses, not being autistic.
A stereotypical trait I relate to is hyper focus all the way. It’s the one thing I struggle to control at all. If I get into hyper focus state I can read and write for hours on end, forgetting to eat, drink, showering, etc. I also struggle with facial expressions, mine and others.
What do you wish people knew or understood about your condition?
In terms of my chronic condition, I wish people knew that our “I’m fine” is very different from theirs. I am in pain most of the time, and “I’m fine” means “I can bare my pain”. As an autistic person, I wish people knew there are adults that have voices. Everything that is available is for children or families. Even apologies, when someone uses Autism as an adjective, is most of the times directed at families, not autistic people. Sometimes it feels like society does not understand we have presence of mind and are not just empty bodies. I would also like society to not take energy for granted, and respect that some people can not keep up in the level that capitalistic jobs makes us do to fit their idea of success (those levels are unhealthy even for neurotypical people).
The idea that we must be extroverted and change ourselves to appear neurotypical is to squeeze our creative and inventive brains into a mould that would erase us and our identity. Success is variable and do not mean anything if it is not set up on our own terms. Let us be us and set up our own paths and dreams. I am much more inquisitive to society norms and like to question everything society takes as a fact. For me, that’s more autistic than what society portray us to be.
Definitions: Alexithymia: the inability to recognise or describe one's own emotions. Neurotypical: not displaying or characterized by autistic or other neurologically atypical patterns of thought or behaviour.
What is Autoimmune disease? (Link)