A Surprising Invisibility

Midwifery Today, Issue 136, Winter 2020.
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I recently gave birth to my second son. During my maternity care I came to realise that a particular set of needs had been invisible to me and were even more invisible to the people supporting me.

I had my first son in Germany, a country where I do not understand the language. Appointments with my midwife there were a case of looking things up on Google translate and having things clearly written down for me. We checked and double-checked to ensure that I understood what was being said. In England, where I do understand the language, I expected things to be much easier. It was humbling to me to discover that they were not.

I am autistic. I have low support needs; in day-to-day life people do not notice that I am autistic. It is easy to believe that if my autism isn’t noticeable it won’t impact on my life or, more specifically, my medical care. Sadly, this isn’t the case. Research shows that autistic people are likely to die far younger than their neurotypical peers, in part due to co-occurring conditions, e.g., epilepsy, and in part due to barriers to health care that prevent people with autism from receiving the same standard of treatment that those who are neurotypical receive. I did not realise the barriers myself until I bumped into them.

I had believed I would be “better” at being pregnant in England than I had been in Germany. I did not think being autistic would have any impact. I thought I could hide it. My first midwife also did not think my being autistic was relevant to my care; after all, I did not seem autistic. To her I acted just like all her other patients.

Masking

I work hard to hide my autism. Before each appointment I would guess at what questions would be asked and practice my responses. I would also prepare chunks of small talk that I could use. In the car on the way to my appointment, I would practice these phrases aloud to make sure their tempo and pitch were right. Within the appointment, I was prone to giving an answer that was easy over giving an accurate answer. I would come away proud that I had been “good” at the appointment.

But when my husband asked me what had happened, I wouldn’t know. What did the numbers on the front of my green file mean? I did not know. Were they measurements? Were they scan dates? I did not know. I was embarrassed and upset that I did not know. I had thought I would be “better” at being pregnant this time around.

Later on in my pregnancy my difficulties with communication meant I was not able to report symptoms that could have threatened my baby’s life.

Why Do I Mask?

You might think it is foolish of me to hide something that has such a serious impact on my health care. I did not plan to self-sabotage in this way. There are reasons I mask:

  • Habit. Masking is how I socially interact. The preparation I went through for my appointments was not something I did because I had a particular wish to confuse my midwife. It was something I do before every social interaction.
  • Embarrassment. There is a lot of misunderstanding and prejudice around autism. When I tell people I am autistic they make judgments about me that are often based on a limited understanding of what the autism spectrum looks like. Especially my part of the spectrum. I am a woman who was diagnosed in adulthood. The research community refer to us as a lost generation. When I say “I am autistic,” I am unlikely to be met with understanding, I worry that people will think something bad of me so I am embarrassed to bring it up. I also worry people will think I am making a fuss. I would rather cope privately than ask for help.
  • Conditioning. For my whole life, society has taught me to suppress certain aspects of myself. The pressure comes specifically from people who are neurotypical; the neurotypical community tries to make the autistic community behave in a more “normal” way. Of course, this doesn’t refer to everyone who is neurotypical and everyone who is autistic. But, in general, there has been huge pressure to conform to neurotypical standards. The effect of this in my life is that I feel it is “polite” to behave in a neurotypical manner, and I presume that those I meet who are neurotypical would want me to do this. I know this is not true across the board, but in general it seems to be easier for people if I behave as they expect me to behave, i.e. if I behave neurotypically. Ironically, I mask out of consideration for other people’s well-being.

Masking has been shown to place enormous pressure on a person’s mental well-being—something which is reflected in the research around mental health and autism. For example, my risk of dying by suicide is significantly higher than a neurotypical person’s risk of dying by suicide and, as an autistic woman, my risks are higher than if I were an autistic man. Researchers exploring this landscape consider this increased risk is due to my being more likely to mask.

Masking risks

  • My masking threatens my mental health.
  • My masking threatens your ability to treat me physically.

Neuro-divide Risks

Communication differences mean information that is given out verbally may not be taken in. Communication differences may mean that there are invisible barriers to information being shared, just as there would be a barrier to a deaf person supplying information on the telephone.

My second midwife was new to the profession, she was young, and I was one of the first women she supported. She was keen to understand me, and my husband and I were keen on me not running up against the barriers that had put me at risk before. We arranged a meeting to discuss the adjustments I would need in order to make health care fully accessible for me. I will discuss some of these adjustments in my next article. For now, here are a few simple things you can do to remove the co-constructed barriers to health care access faced by neurodivergent people.

What Can Birthworkers Do?

  • Ask the woman being supported if she is neurodivergent or if she has neurodivergent family members: An awareness of neurodivergence, or the possibility of neurodivergence, will alert you to communication differences.
  • Take note of neurodivergence: If someone’s medical records state that they are neurodivergent, consider this significant. That I did not initially consider my own neurodivergence to be significant was one of the barriers to health care that I faced. If my midwife had understood this ahead of me, I would have been helped enormously.
  • Check understanding: Ask the person to explain her understanding of information you have relayed to her so you can check what she has taken in.
  • Write things down/draw: Consider alternative methods of communicating information, e.g., drawing pictures, writing key information down, giving leaflets, providing links to online resources.
  • Allow extra time for questions: I take a long time to formulate a spoken question in my head. When asked “Do you have any questions?”, I found it much easier to say “no” than to try and find a sentence and to risk the embarrassment of not getting my words out correctly. My second midwife either waited for an extra-long time for me to get my sentence together or she told me at the start of a part of the appointment that did not involve my processing of language—for example, when she was measuring my bump—that afterward I could ask questions. I liked that especially, as it meant I could formulate the question without the pressure of someone waiting for me to get my act together.

Hopefully doing these things will be simple for you. Being aware of differences does not need to be arduous; it’s just about being curious and becoming informed. Your effort will make all the difference for autistic women like me and may well help a lot of other people as well.

About Author: Joanna Grace

Joanna Grace is a Sensory Engagement and Inclusion Specialist and founder of The Sensory Projects. Her Twitter: @Jo3Grace. Her son recently became the UK’s youngest author when Routledge published his book, My Mummy Is Autistic, with a foreword by Chris Packham. Joanna’s own book, The Subtle Spectrum, also by Routledge, is due for publication this year.

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