Rochelle Johnson is a writer living in Melbourne, Australia.
She is an advocate for autism and is a transgender acceptance and safety on her website Proud Autistic Living, she also happens to identify with both.
Autism Awareness Week takes place from 27 March until 2 April in 2017. To help raise awareness for the condition and what it’s like for people who suffer from it, we chatted with Rochelle to find out more about what her life has been like.
What’s has it really been like growing up with autism?
I was diagnosed officially in 2013, though I had begun to suspect I was autistic earlier than this, around 2009 I think.
I had two Autistic daughters and went through that period of wondering about my own actions and thoughts through the filter. Much of what they did made perfect sense to me but was out of kilter with what the ‘norm’ is supposed to be.
My life has been impacted by autism in almost every way. It is the way I am wired, and so the way I think, feel, act, respond, write, everything is done through an autistic filter.
In terms of what it was like growing up for me, it must be seen through that filter of being undiagnosed.
I’m 47 now, so to be diagnosed as a kid back then was a lot less common.
My home life was extremely difficult, an authoritarian father and mother and antagonistic sisters left me in such a state, that I never really felt safe. Everything I ever did I questioned, I walked on eggshells for fear of upsetting any of them.
I was regularly told how I was difficult, stupid, a failure and would never amount to anything. My home was not a refuge or a safe place.
School life was marginally better. Though due to the turmoil at home I kind of walked around with a great big V for Victim on me. I was bullied relentlessly. In spite of the bullying, I negotiated school life in a kind of haze or fog. There are a lot of blank spaces from this time.
I can’t help but think that my repressed true gender had something to do with all this too. I was always scared of the boys, wanted to be with the girls and found them easier to relate to and wanted to be their friends. When it came to dealing with change rooms for sports activities I was petrified and received much bullying and teasing.
In all that some teachers recognised that I was quite intelligent and in their own way made attempts to communicate that through school reports. Unfortunately, the message that I was capable of better was used as a weapon against me at home.
What’s life like for you now?
Life now is easier than in childhood.
I am able to express myself in blogs and have connections with other autistics online. However, I do lack much in the way of face to face friendships.
I have two failed marriages one due to essentially marrying the first woman I thought would have me, which was a disaster as you can imagine. The autistic lack of insight was clearly a factor in that choice. I had two children with her who are now adult.
My second marriage was to a wonderful woman, whom I never thought I would lose, alas that has happened. She was instrumental in assisting diagnosis with my eldest daughter from the first marriage, and then again with the daughter we share.
This relationship has only ended in the last 6 months and in a sense, the pain is still quite raw. I believed I would always be accepted by her, and my coming out was a large part of the end of that relationship.
What are the main challenges you face?
There really are a lot of challenges that I face.
As a person that managed to fake it through for a long time, there is a contingent that simply doesn’t believe the diagnosis. I abhor the functioning labels but it is certainly a truism that those of us seen to be high functioning are provided with no support services, particularly in adulthood.
Yes I can ‘pass’ I suppose, but what is not seen is the internal struggle to say the right thing, do the right thing, talk when it is your turn, find the correct response in the filling cabinet of responses. It’s utterly exhausting.
The social contract and communication issues are most likely my biggest difficulties. I don’t have massive sensory issues, though I find a multitude of sounds very difficult, almost impossible at times to distinguish between.
The result of this has been a very sketchy employment history. I have had many jobs but none everlasting long term. I have lost jobs and quit jobs. But this has never been due to an inability or incompetence etc, always due to a social interaction or communication type of issue. It’s 2017 now and I haven’t had a job since March of 2013, and pretty much had no prospects to get one either. On paper I should be employable, I have 2 degrees and a diploma, but in reality, it is not the case.
There is very little to assist us in this regard. In Australia, 35% of autistic adults have paid employment of some kind, so that’s two-thirds of us that have no employment.
You identify as trans, can you tell us a bit about your journey?
Yes, I am a transgender woman. I feel at times I am somewhat late to the party on this front.
I haven’t lived my whole life feeling trapped in the wrong body, not so much because I didn’t know but I was too scared to acknowledge it.
I have very distinct memories of watching my mother dress in fascination as a small child, playing with her makeup and wanting to try it. The violent response I got to that was a starting point to 40 years of repressing who I am.
Through my childhood I was always interested in playing with the girls, being with the girls, learning the so-called girl’s crafts and things like that. This was frowned upon. My home was very much a ‘boys should do this and wear that’ and ‘girls do this and wear that’ household.
I think upon reflection I was just too scared to go there and so I repressed the feelings.
As I became involved in the autistic community, I happened upon some trans people, and I began to wonder and ask questions and so forth.
Initially, I thought the gender binary label was useless – until I realised that’s exactly what I was, gender non-binary. That was the first real step in the process.
I tested the concept with a few people online and then I spoke to my partner. Once I did that it was as though a lid had been ripped away from a box, I found myself constantly thinking of myself in more female terms, looking in the mirror and imagining makeup and femme clothing.
During this time, my partner went away for a few days, and I took the opportunity to try on some of her clothes – something inside me clicked. It was like an experience of euphoria. It seemed silly but It was a catalyst moment. I was utterly sure that I wasn’t just non-binary but I was, in fact, a woman.
I then had the mammoth task of talking to my partner. This did not go well. They would have liked me to have just stopped there. The issue of what that meant from a relationship and sexuality point of view was not lost on her. In the end, she felt unable to continue the relationship, as she feels strongly she is a heterosexual, not bi, not lesbian. The things about me that physically attracted her were changing or about to change. And so that was the end.
Since that time I have come out publicly, and I live full time as a woman. I undertake hormone therapy and am enjoying the changes in my body and my emotions. I feel so much more right.
Hormones are a large part of that, it’s one of those intangible things that you can’t explain, but as Oestrogen entered my system I felt more right, more me than I ever had.
Are you happy?
Happy seems such a fleeting thing. I am very much a mix. I am happy to be transitioning, I am happy that I am a connected person in the autistic advocacy world. And yet I am incredibly sad at the loss of my marriage and partner.
It is extremely common for autistic people to experience mental health issues along with their neurology. For me this too has been a lifelong thing, I have been diagnosed recently with Dysthymia, though I believe I have had this all of my life. I also suffer from anxiety. These things make life a challenge.
Dealing every day with the concept that you seem to be unemployable is certainly not conducive to happiness.
I am quite an active girl and a member of a local running group. This helps me a lot and provides some very surface level connection for me. They have been amazing in how they have accepted and celebrated my transition with me. They treat me just as they always did.
What would you like people to understand about being an adult with autism?
I think perhaps the most cogent point that people need to understand about autism is that it’s not a thing, it’s not something you catch, it’s not something you have, and it’s not something you walk around with. It is a neurological difference that permeates every part of you. It’s something you are not something you have.
That brings with it both strengths and challenges. The most obvious of these being communication, social and sensory issues. This tends to make people scared of us, scared to engage with us and scared to take a chance with us.
The issue of speech is also a real issue and an important thing that the general world really needs
to understand is that speech doesn’t equal intelligence, in fact, it doesn’t even equal communication.
The most important thing I think in all of this is when you consider or interact with autistic people, presume confidence. Presume that with support and accommodation that success is the most likely outcome.
Is there any advice you have for other people living with autism?
Be Proud of who you are. Accept your autistic reality and let it contribute to the wonderful person that you are.
MORE : World Autism Awareness Week: How to calm down an autistic child in meltdown
MORE : World Autism Awareness Week: What is Autism Spectrum Disorder?
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