Don’t neglect our healthcare because you think it’s “just the autism” or “anxiety.”
Attributing everything to our autism is dangerous – and can even be deadly.

---

Not every health issue we have is “just autism.”

A personal example:

A few years ago, my caregiver and I went to my primary doctor for an urgent appointment.
I was struggling with breathing, and my physical therapists noted that my oxygen levels were hitting the low 80s. I explained with my AAC how we were concerned, and that my shortness of breath was becoming more difficult. The doctor laughed and asked why I would be worried, saying “an oxygen level of 80 isn’t a concern.”
[Author’s note: oxygen levels at 80% are, in fact, a concern.]

My caregiver told her that my physical therapists were the ones who wanted me to be checked. I was more sensory avoidant, stressed, and constantly tired – and both my caregivers and the PT office had noticed it. The doctor responded by switching topics, questioning my most recent emergency room visit and follow-up tests from my cardiologist. We explained that it was due to a recent pericardial effusion that was being taken care of. The doctor continued that needing all the testing was excessive – and suggested that all my medical concerns were just anxiety or a function of my autism.

My caregiver pushed back, saying that I was diagnosed with these conditions at a local, respected research hospital – and that they weren’t caused by autism or anxiety. I tried to type that I have dealt with medical stuff my whole life, and that the breathing issue was new. She ignored me. Unsurprisingly, I started to cry.

The appointment was not productive. She insisted it was anxiety, just part of my autism and “behavior.” For a year or two longer, I just pushed through the breathing difficulties and hoped for the best. I kept getting constant headaches, started losing progress in physical therapy, and felt weak and sluggish.

Finally, that doctor left the practice – and I was given a referral to the local allergist doctor due to sporadic allergic reactions that we couldn’t figure out. The new doctor ran several different tests the same day. He also immediately sent me for a pulmonary function test and challenge, because “low 80s are absolutely NOT normal.” He thought it might be asthma. He was right – with a twist.

It turned out that I have a severe form of asthma that wasn’t responding to treatment at all.
Eosinophilic asthma causes the entire respiratory system to swell and constrict, with constant inflammation.
My airway was narrowed, and nasal passages were almost completely blocked and chronically inflamed – to the point where I needed surgery.

I went almost two years feeling like I was breathing through a straw, having chronically low oxygen – because the doctor just blamed the autism and anxiety.

---

Growing up, I was constantly dismissed when I tried to say something was wrong.
I learned to ignore my body’s signals, because everyone else already did – especially professionals.
Is it really a surprise that I have trouble with interception as an adult?

When I was 10, I saw a doctor for hearing loss. He said it was just “attention seeking,” because I was just “sad about not having parents or friends” that loved me.
After seeing an at a other doctor at a children’s research hospital, we discovered that I actually have a structural inner ear condition. At that point, I cried because there was finally tangible evidence that proved I had been telling the truth the whole time.

Immediately after an audiology test, they told my family that I needed a hearing aid for sensorineural hearing loss – and that my hearing would decline further over the years. Now writing at age 27, this has indeed been the case.

And of course, these issues have extended well into adulthood.

• My gastroparesis?
  • “You’re an autistic girl; stomach aches are normal for people like you.”
  • Turns out that not being able to eat anything without feeling awful was not normal.
    
• My last hospitalization for a MRSA infection?
  • The first time I went to the ER, the doctor glanced at it and sent me home without running any tests. He assumed that I was simply exaggerating the pain and that it would go away in a day or two.
  • A day later, my doctor sent me back insisting they treat immediately for orbital cellulitis. I was quickly admitted into the hospital for about 4 to 5 days, and I still have some permanent vision problems in that eye.

Blaming everything on autism and “behaviors” is dangerous – and sometimes deadly.

---

Autism does not negate that other health conditions can exist. It does not exist in a vacuum. We are more likely to have different health conditions- but they are constantly overlooked as “just autism” by professional.
This is especially true for autistics with intellectual disabilities, along with those of us who are nonspeaking or have unreliable speech.

• Hitting head with hands or against things?
  • It could be a headache or even a seizure.
    
• Biting?
  • Dental issues aren’t uncommon, and neither are canker sores/mouth ulcers.
    
• Aggression?
  • Infections (especially UTI and ear infections) and pain will make anyone frustrated.
    
• Toileting difficulties?
  • Gl disorders, bladder/stool incontinence, interception difficulties, etc.

There are so many different conditions and health issues that can be involved. Of course, we know that not everything is medical – but it often is. A lot of people seem to forget this.

Parents shouldn’t have to argue with doctors about investigating when something feels wrong.
Autistic people shouldn’t have to have meltdowns over trying to self-advocate. We shouldn’t need to have someone with us just to make sure a doctor takes us seriously.

Autistic people and their families have to deal with this regularly, and often intertwined with other healthcare disparities. The intersections of income, race, gender, locations, physical disabilities, etc – these all impact healthcare in different ways.

The only reason I have been able to get (mostly) appropriate care is because of loved ones who helped me advocate for what I needed. Doctors tend to take you slightly more seriously if you have a non-disabled person with you. In my case, needing an AAC device also impacts it as well. If you can’t use speech to fully communicate, they immediately treat you as incompetent and want your support person to answer the questions instead.

When arguing with medical bias and insurance companies, it should not be a fight to get the care we need.
Autistic people and their families deserve accessible and well-informed healthcare – whether our access needs are physical, cognitive, or sensory-based.

And most of all, we need compassionate healthcare to be the standard – not the exception.

• autism
• Reflections