Life as an Autistic Doula – Yes, I said Autistic!
Okay so here is the thing, I am not your average run of the mill Doula. I am not one that will fit what many might deem to be what a Doula might ‘look like’ or ‘act like’. I am not out there, I am part of no little clicks and don’t want to be, I don’t really fit into any ideological mould of society (don’t much care for societies so-called ‘moulds’ or standards in terms of the way I should look or behave to make myself more ‘acceptable’ to neuro-typical people), and I am not a perfectly held up Doula all of the time. Not only do I have autism, but I am a Mum of 5 children and 2 have a wide range of disabilities so my advocacy work is almost a day-to-day thing in my life. This is particularly true for those with needs that are outside the realm of ‘the norm’. That said, I am actually pretty good at my job as a Doula – this job is my heart and my soul; I care deeply about the work I do and the families I support. If you need info you can bet that I have it, or I will help you gather more than you could possibly need. If you need that rock who will nurture you through every little bit of your pregnancy and birth in every way possible without stipulations, then look no further. But, in terms of looking the part, I probably won’t.
You see I dress nicely, my hair is fine – as far as ‘normalcy’ goes look wise I probably look okay (unless my eczema & allergies flair up then I might look like a scaly lobster) but sometimes depending on what is happening around me or how I am coping on a particular day I can’t always keep eye contact with you, I might look at the table between us, or at my hands, or the floor when I speak. Sometimes when you ask me a question, I might take a little bit longer to come up with a response which means I can fumble with my words and must come back to it later. I ALWAYS do though, often if I fumble I will re-initiate the conversation later in our meet to answer your question, or I will send you a message via email or phone after I have left and had a bit more time to formulate my response. If I don’t have the answer, I jump onto the many medical journals I am a member of to search through a wealth of information to answer your question and provide you with the most up to date informative responses. You see none of this is usually because I lack the capabilities to be an amazing Doula, and often not even because I don’t know the answer; in fact, I often know the answer but stumble with ways to express or explain it effectively on my bad days. Oddly, I never seem to have bad days at the birth itself; at the birth itself, I am in my element. This is where I EXCEL as a Doula. I have moments at meets pre or post (usually the initial meet) where my autism can cause me hassles with our communication in the ways I mentioned; however, you couldn’t find a more solid passionate rock of a Doula with that experienced by clients at their birth. Where the autistic traits have me struggle with words during meets at times, it helps me become so immersed in pregnancy and birth topics that I can spend days reading without breaks or sleep until I feel I have all possible information to date available on that topic absorbed into my head like a sponge. I don’t and can’t stick it aside to do later – you see pregnancy and birth is my autistic ‘interest’ and supporting families to find their own inner power for birth is my PASSION. I will spend hours, days, nights of my time on the computer and books helping to obtain any bit of information you could possibly need or want. Then my initial fumbling self when you first asked the question will arm you up with every ounce of knowledge and tools possible. You see as Greta Thunberg says, “Autism is my superpower” and when it comes to pregnancy, birth, and supporting families on their incredible journey I feel the same way- I will not stop and I will not quit!
See being an Autistic Doula is actually FANTASTIC – you see as an autistic Doula I can step outside the box because I don’t live ‘in the box’ this means I can support you in so many ways with an incredibly open mind and help find you avenues that a neurotypical person may not even consider as an option. I am truthful, I can’t tell a lie if you paid me and sometimes, I can be overly truthful with a very keen eye for detail. This also means I cannot be FAKE which seems to be a thing today in society. Many will say one thing to your face and say another behind your back the moment you turn around. Sadly, this even happens in Doula communities – as much as I would like to say everyone is light, nice and real – I would simply be feeding you a shovel full of bullshit. Because realistically the world and society just do NOT work that way. Although, it would be nice if it did.
It is funny really the amount of times I have heard comments like ‘you don’t look autistic’ or ‘are you sure you’re autistic’, or the funniest one to date is ’you’re not weird enough to be autistic’ because as someone who in past years has had people tell others to stay away from that ‘weird’ woman, I think I am weird enough ha-ha! But seriously, what is all of this meant to mean? Last I checked I am pretty sure I am autistic, diagnosed as autistic, and I don’t know what people mean by not looking autistic, or not being ‘weird enough’. I didn’t know that being autistic meant I had to look or act a particular way. Maybe I am doing it wrong shrugs.
One thing is for sure I am autistic, and I am 1 in every 70 people who have autism in Australia. In addition, I am just 1 autistic woman in what is estimated to be 1 autistic woman to 3 autistic men. Although, it is believed the rate of women on the spectrum is much higher as so many women and girls go undiagnosed due to many of the autistic assessments being based on autistic traits in males. It is now becoming recognized and more acknowledged that girls and women on the autism spectrum often display different traits to their male counterparts. A really big difference is our ability to ‘mask’ and try to make ourselves fit into social settings. This results in many girls and women getting ‘missed’ as we look just a bit socially awkward when out. You see we are great social imitators and are very good at suppressing our autistic traits – well for the most part. This makes us much harder to spot in society in terms of our autism. But this is something quite exhausting for us and can lead to autistic burn out which I will cover in another blog post. In addition, it is believed that women or girls on the spectrum also often poses stronger language and social skills than their male counterparts, and may even be more likely to engage in imaginative play or appear developmentally the same as peers in this area – unless you look incredibly closely to find their intensity differs (particularly when it comes to their areas of ‘interest’). If this isn’t enough females on the spectrum are less likely to externalize their emotions; this leads to limited referrals for assistance and higher rates of initial, incorrect, or coinciding diagnoses like depression and anxiety. The current standardized assessments, screening, and intervention programs for autism do not really factor this in as they are primarily designed based on the studies of males on the autism spectrum who often present differently to women on the spectrum.
So now you have a rough idea of what it is, let us run through what it is not. Because realistically there is a lot of stigmas and a lot of myth attached to the diagnosis or word ‘autistic’.
Number 1 Autism isn’t the desire to have no friends and be socially isolated.
We like anyone else like to have friends; it’s just that we may not always be great at making or keeping friends because our communication skills aren’t the best or we feel the need to try to make ourselves ‘fit’. This leads to burning out and honestly, it’s exhausting. We do this because it’s more common for us to be judged or ridiculed for our social awkwardness (to dumb it all down) either to our face or behind our back when we don’t put in a huge effort to act ‘normal’. I myself love interacting with others, I love my close friends and we make time for each other (yes many are neurotypical so don’t have autism) but I don’t have a huge desire to put myself out there to create more friends. This is because rejection and ridicule are insanely common for those of us on the spectrum and we burn ourselves out trying to make ourselves fit. So, for me, I am more than content and happy being un-masked (for want of a better term) self with my close friends rather than trying to make myself fit searching for new ones.
Number 2 People with autism can’t feel emotions and lack empathy. "erg let’s talk about this one"
This myth really irritates me, and I have had people try to claim this of me because I can’t effectively express my emotions. But all my close friends and even my clients KNOW and would say this is the furthest thing from the truth. We find, often we can feel too much and have too much empathy. But sometimes we just can’t express these effectively, or describe what we are feeling, or we might even miss cues but when/if it is pointed out wow do, we feel those emotions. I feel so many emotions as an autistic person – including love and empathy – but you can’t always see this past crappy exterior display of these. I am not a big hugger but I’m a hugger when I attend births (go figure), I hate touching but I’m all about the massages and hand-holding at births (again go figure), rarely show outward emotions of affection but again I am very outwardly emotional and affectionate with heaps of love pouring out at births.
Number 3 People with autism are either dumb or smart. "Okay, let’s stop right there!"
Firstly, I wish people would stop saying ‘dumb’ it is downright insulting. Secondly, no! Just like any neurotypical person, we can be either intellectually delayed/disabled, or we can have high IQ, or we can have your average run of the mill intelligence. I personally am pretty much all over the place. I am good with numbers and puzzle-solving, including remembering long numbers, but I have crap working memory. I sat average on every other aspect, and low on others. Overall, I came out as average. I don’t hold much regard for the tests anyway as I was basically told I wasn’t as smart as I thought I was in maths and language when I had my IQ test; however, this not as smart as I think I am woman walked out of her university course with a 6.75 GPA (highest mark you could get was 7) and High Distinctions in every subject including the ones I was told I was ‘not as smart as I thought I was’ ones. Not too damn bad for someone who was supposedly ‘not that smart’ in the related areas don’t you think? So as far as I am concerned IQ tests aren’t worth their weight in paper and can bite me!
Number 4 Autism is something that only affects children, males, and children will grow out of it. "haha okay"
I am torn between I wish and thank gosh that isn’t possible because my autism is part of what makes me who I am, and I am proud of that. While it creates hurdles and difficulty for me at times, I am also incredibly thankful for the abilities it provides me. I have heightened senses (this means I can hear things really loudly and a lot of things, I also smell things incredibly faint that most wouldn’t be able to smell – I smelt burning electrical wires once before it caused a fire), I am able to hyper-focus on my interests which for me is pregnancy and birth, I have a keen eye for detail, I am the most brutally honest and trustworthy person you could ever meet, and I could quote you stats, facts and figures until the cows come home – amongst many of my other awesome autism-related powers. But, basically no you don’t just grow out of it – this is something you have as a child and is part of who you are for the rest of your life. Obviously, I don’t need to point out it affects females too.
Number 5 People with autism aren’t creative and don’t understand or like fiction. "Okay so, this is a load of rubbish!"
People with autism aren’t creative and don’t understand or like fiction. Okay so, this is a load of rubbish! There are many creative people on the autism spectrum who grow up to be actors, singers, writers (including fiction writers – particularly autistic girls or women who are known for their tendency to write stories), musicians, inventors, entrepreneurs, and artists. I personally am one of the smaller minority who does actually struggle with fiction, I better grasp the non-fiction things; however, I do LOVE poetry and used to win poetry competitions, my art isn't too bad either. My creative outside the box thinking also helps clients where others can't find a solution.
Now, these are all why I feel that while I may at times struggle with my autism, I am very grateful and happy to have such amazing gifts as a result of my autism. It is also why many of my clients have obtained so much from my care as a Doula – so cheers to Autism the hidden superpower!
Next blog post I am going to explain what it looks like to be a woman on the autism spectrum.
Thanks for reading.