What would an early autism diagnosis mean?

Imagine a 5 year old girl diagnosed with autism,  with traits of hyperlexia, RSD, PDA, autistic paralysis, sensory issues, an affinity for sound and some executive dysfunction, is able to speak well for age, read above her age and moves well for age,  with hypermobility noted in toes (walking on knuckles), knees (hyperflexion) and hands (finger spread on typewriter and organ keyboard, hyperflexion and top joint lock).

For a 5-year-old girl with autism and those specific traits, early intervention is key. Tailored therapy programs focusing on speech, sensory integration, social skills, occupational therapy and emotional regulation can be beneficial. Creating a structured and predictable environment, providing sensory accommodations, and promoting communication through various means can also support her development. It’s essential to work closely with professionals who understand the complexities of autism in girls to ensure she receives the best possible care and support.

What I got was ballet lessons, not ideal for someone with hypermobility in toes and knees. What I got were speech and drama lessons, and competing in eistedfoddau. What I got was access to the senior reading list from the Scholastic bookshop when I was 7 years old. What I got was a prize in a writing competition when I was 6 years old.

Autistic paralysis, also known as shutdown or freeze response, is a common reaction to overwhelming sensory input, emotional stress, or social situations in individuals on the autism spectrum. During a shutdown, a person may become non-responsive, withdraw, or appear to be “stuck” and unable to move or communicate. It’s a coping mechanism to protect oneself from further distress. Understanding and recognizing these signs can help provide support and create a safe environment for someone experiencing autistic paralysis.

This was evident in ’81, at nine years of age. I sang in the church choir, and we always finished up after the 10am Sunday service with my father picking me, and the choir director, up and driving to our home, where a lunch would be waiting.

But one Sunday, it didn’t happen this way, and the choir was ushered next door to the church hall for some kind of presentation. I remember saying, constantly, no, this isn’t right,  we should be at home, we should be at home, I want to go home. At the time, it was thought that I had fainted for not eating earlier that morning.

In reality, it was probably autistic paralysis, brought on by a change in routine,  and being told to sit down and be quiet. When we finally got home, I got roused on for creating a scene, and sent to my room without lunch.

Internalised ableism and shame. Internalized ableism refers to the belief systems or attitudes held by individuals with disabilities towards themselves based on societal norms and expectations. These negative beliefs may lead to feelings of shame, guilt, worthlessness, or even depression and anxiety. Addressing and challenging these beliefs through therapy or self-reflection can help individuals with disabilities develop a healthier sense of self and improve overall mental health outcomes..

This is what I have, today, when I look through the filter of internalised ableism, at the mess and clutter caused by executive dysfunction and object permanence dysfunction.

I see the pile of laundry, the books not put away, the Christmas decorations not put back in their boxes, and feel ashamed, so ashamed. I get hot and tight from unshed tears and a hard lump in my throat. I feel ashamed that I can’t invite friends over for coffee, because of my “piles of shame”.

I have notes on my mirrors to remind myself of two moving, sung, mantras. “I am enough, I am enough, I am enough, Just as I am”, and “I am beautiful, I am amazing, I am blessed, I am enough”.

These are just some of the costs of my undiagnosed autism.

If you think your child has autism, get them assessed. If you think you have autism, get assessed. Stop the Complex PTSD (C-PTSD) that follows a life of undiagnosed autism and twisting yourself inside out to try and fit in and be normal.

Let’s normalise it. Discover your autism, discover having an autism spectrum condition. Celebrate your difference, find your support crew and your tribe.

And above all, practice self care – stimming, favourite food, special interest – whatever makes you feel good and is good for you.

Autism – not a superpower, but life.