Autism Interview #154: Autistically Sarah on Autistic Womanhood, Identity, and Expertise

Sarah is a recently-diagnosed Autistic and “ADHDer” who regularly shares her experiences in an effort to shatter stereotypes about neurodivergent people. She blogs at Autistically Sarah and is a public advocate for autism acceptance and neurodiversity.

Although you didn’t receive a diagnosis until recently, as an adult, what difficulties did you have growing up that you now understand to be a result of those around you not understanding autism?

There are lots of things, but I think a key thing included is not instinctively knowing how to interact with my peers. It very much felt like a skill I had to develop, and I got better with time. I thought this was the same for the other kids too, but since learning about my autism, it was surprising that this wasn’t the case for most people.

I think a lot of people also didn’t understand the sensory aspect as well. As others around you can only see your reaction to it and not feel the discomfort with certain noises, tastes, and textures you’re experiencing as an autistic person.

You’ve said in a blog post, “The ironic thing is when people say or imply ‘Your autism doesn’t define you’; I had no sense of identity until I discovered my autism. I felt lost as a person, but I don’t anymore since having a better understanding of my neurodivergence.” In your opinion, should children be learning about autism at younger ages, so they grow with an awareness of their Autistic identity?

Yes! and not just autistic children, but all children. Many of my most challenging moments growing up were when people were bullying me because they didn’t understand the differences or weren’t educated about autism and neurodiversity. I think society needs to be responsible for addressing this as every person will interact with autistic people (whether they realise it or not). If there was a little more understanding and acceptance of autism, then this would make a big difference to us autistics navigating this neurotypical world.

When it comes to autistic children specifically, I think it’s important to be transparent about their diagnosis. They will likely know they’re different, but it can be confusing if you don’t know why. I know some parents decide not to tell their children, and I can see the benefit in the short term. But long term it’s better to know because then at least they can understand why some things may seem challenging to them, and It may help young children not feel like failures or that they are useless. I was way too harsh on myself by criticising my autistic traits from childhood (though I didn’t know they were autistic traits at the time) until I got my diagnosis. Since then, it’s been a lot easier with self-acceptance, and having my autism recognised is the only thing that’s helped with this. It’s really improved my self-esteem, and I’m no longer viewing myself as a broken person anymore.

You’ve said that masking in school was traumatizing. What advice do you have now (as an adult with an understanding of autism) for the younger you?

If I’m honest, the school environment I was in was completely unsuitable for me. It was a massive school that did not address bullying, and it was a sensory nightmare. It’s hard to say exactly what I would tell my younger self, as my younger self kept telling my parents I needed to change schools etc. I think the advice I’d say to my parents is to trust your daughter more, she knows what she’s talking about rather than the professionals who say changing school won’t make much difference.

On a personal level, I would probably say to my younger self that school is not forever, life is better on the other side, and the amount of pain you’re experiencing is not normal. My needs were not recognised; I assumed that my negative experiences were ordinary. However, I now understand them to be adverse and that many of my peers had a more positive experience in education than I did.

Were you misdiagnosed with something other than autism as a child? If so, why do you think this was the case and what difficulties did it cause?

Yes, so I actually had autism assessments at both four and five years old. My first assessment diagnosed me with a receptive and expressive language disorder (as I had language delay), but that was only a small part of the picture. They picked up many of my autistic traits, but then wouldn’t conclude it was autism (which looking back seems very strange to me). When the diagnosis was reviewed later, I had apparently “improved too much” to be autistic and I was told that my language disorder had got better due to speech language therapy.

The reality was I was masking during that second assessment, as I was beginning to learn about neurotypical culture, and I knew how to act being ‘socially acceptable’. So although my development may have appeared to be more normal at the time, I was performing for the adults at age 5, and the ‘experts’ didn’t see through it.

In terms of the impact this had, no one recognised how I was genuinely struggling on the inside. The people closest to me knew how I was struggling, but when they reached out for help, it didn’t amount to anything, as I would appear ‘fine’ in front of strangers as part of my mask. Long-term masking is exhausting and has a devastating impact on mental health, so it’s something to be aware of with the autistic people you love and care for.

What about today’s culture makes it especially difficult to live as Autistic woman?

Oh my God, where do I even begin! I could give a whole lecture on this topic.

Still, I think an important aspect of this is the vulnerability of autistic women in our culture and expectations that neurotypical women put on us (this is a massive generalisation and certainly does not apply to all NT women).

Our social communication differences mean that we can be more vulnerable to different types of abuse, such as sexual, domestic, or financial. If we don’t know that we’re autistic or are not aware of how to protect ourselves, it can be devastating. Sadly some of the people who pick up on our social differences can see autistic women as easy targets, which increases our vulnerability. 

Judgements from NT women mainly come in the form of microaggressions, but they do add up and can become too much. It can range anything from “I’ve got you perfume for your birthday because you’re too old not to be wearing perfume” to “How can you live like that (when referring to eating the same meals every day).

Often I’ve felt socially excluded by them fairly quickly because they don’t understand that socialising less doesn’t mean I don’t want to socialise at all. Also, when they see autistic traits, they may just completely exclude you, in my experience. NT women are sadly pretty awful at not accepting differences from my lived experience.

Beyond just these expectations, the fact that autistic women and how autism can present in us is only just starting to be recognised. It means that most of our schools, doctors, and employers have little to no understanding of adjustments we may need or why we are different. It can be exhausting, as it sometimes feels like being an unpaid teacher for the amount of time I spend explaining my autism to professionals and others so my needs can truly be met.

What are some of the most infuriating/frustrating/troubling, or simply annoying things you’ve seen Autistic “experts” do or say?

The fact that they’re referring to themselves as Autism experts. My own view is that there is no such thing as an autism expert. Autism can present in so many different ways; it’s highly unlikely that one individual will have the solution to every single problem or difficulty an autistic person may face.

I think it’s worse when neurotypicals refer to themselves as autism experts, as they have no idea what it’s like to live as an autistic person in this world, even if they have autistic family members. Chances are they’ll know more about autism than the average person, but unless you’ve lived every second of your life as an autistic person, you cannot fully understand what it is like to be autistic. It’s like a man saying they are an expert on women’s issues. You can learn about what it’s like, but you will never comprehensively know the reality of our experiences if you’re neurotypical.

Even though I’ve studied autism as part of my psychology degree at a postgrad level, worked with supporting other autistic individuals, and I’ve been autistic for 25 years. I don’t consider myself an autism expert. I’m reasonably confident I know more about autism than most people, but that doesn’t automatically make me an expert. I still have a lot to learn about autism. Unless someone has had the lived experience of every autistic person that has ever existed, I don’t see how anybody could truly be an autism expert!

If self-proclaimed autism experts truly want the best for the autistic community, they would empower and give autistic voices space too. Think about how many events have been run about autism with little or no actually autistic people involved? That’s the start of the problem for many.

What are some ways parents and educators can help people on the spectrum develop a positive Autistic identity?

Don’t solely focus on the perceived deficits and shortcoming of the autistic people you support and care for. Help find their strengths as this is vital for building self-esteem and potentially finding a future career. Remember that we are human beings, and not simply lesser people you need to put through endless therapies to be made ‘normal’. Let them exist and be happy as their autistic self. The current world won’t give them that space, but your home/classroom can; also help the world to become more accepting of autistic people too, it’s one of the greatest gifts you can give autistic people for their long-term happiness.

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