I am forty-one years old. I work full-time in a professional job, I own my own home, I have a Masters degree, I am financially independent, I have written three published books. So why do you suppose that people often speak to me as if I am a little girl ? While I can’t claim to understand that I know what is gong through the minds of people who ask me if I ‘live at home with your mummy?’ or ask if I know how to order at a restaurant, I suspect it may have something to do with one of my attributes – the attribute of Autism.
I am far from the only Autistic person to experience this. I think we all get it to differing degrees. Sometimes it comes from a position of concern and care and at times from derision (like the triage nurse who had a go at me for reading Harry Potter which apparently was ‘for children’ when I was in the emergency room once in 2004. At the time Harry Potter was my passionate interest and one of the few things that gave me pleasure).
Autistic expression of identity can look different to its non-Auitstic counterpart. We are often interested in things non-Autistic people don’t care about and for some reason this seems to equate with us being seen as children. I like bright colours and sparkly things – I have visual processing issues which respond very badly to words on a screen but get excited by bright colours and sparkles. I wonder if this – and my open and honest presentation and easy laugh – maybe makes some people think I am less capable as an adult. I will say that they shouldn’t think that at all.
Autistic adults are so often seen as innocents, as children and sexless, neuter beings. If we are lucky this means only that we miss out on meeting potential partners and if we are unlucky it can translate into abuse or violence. I know probably hundreds of people on the spectrum well enough to know that we have all the sexualities and gender identities that non-Autistic people do. I have Autistic friends who are gay, bisexual, heterosexual, asexual. I have Autistic friends who identify as transgender, pansexual, sis gender and everything in between. Personally I identify as asexual but I have had sexual experiences in the past too.
I think the ‘children’ tag may come in part from our different communication styles which means that we as Autistic people are often open and honest and operate on one level whereas out non-Autistic friends have a more nuanced and multi-level communication style . Perhaps non-Autistic people are more like us as children (I don’t know, having never been a non-Autistic child myself). Perhaps this means that people see us as akin to children. I don’t know. I know it is very frustrating. I get it all the time. It also means that some people treat me like I’m an idiot who doesn’t know what’s going on. I imagine this must be even worse for Autistic people who do not speak as society does seem to attach a label of non-intelligent to non-speaking (which is often completely wrong. Many non-speaking people have exceptional intellect and sensitivity.)
I am never sure how to response to strangers who talk to me like I am a particularly unintelligent eight year-old. Sometimes I play up to it and then drop in a comment about some exceptional achievement I have had (because I am just a little bit evil!). I think this is another area which needs to be included in building Autism understanding, respect, acceptance and awareness. I say thins not only because it is frustrating for Autistic people to be treated this way and is very annoying but also because I think it may be robbing some of us of our potential. Imagine that an Autistic somebody goes to a job interview and the selection panel misinterpret their Autistic mannerisms as them begin immature or incompetent to do the job? Even if that person was the best candidate for the position they would probably not get it. This misconception of Autistic innocents and children may be robbing us of a voice in society. It may contribute to us being discriminated against as we are seen as not begin capable of managing our own destiny.
There are so many domains of life which people do -Autistic and non-Autistic alike. We ARE capable and we need to change that perception around innocence. I don’t know exactly what to do to achieve that change but I have added it to ‘the list’ of things I will try to have some impact on, with my advocate and passionate colleagues. And I will be wearing my rainbow handbag and sparkly shoes and big jewellery. That does not make me a child, it makes me my happiest and favourite manifestation of Jeanette. I have not been a child for many years and I am competent and confident as a different kind of adult.
Shiny shoes!!
Interestingly enough, I took my Eeyore handbag to my last job interview 😉 Stuff what they think about it.
You’ve made me think about one of the things I love about modern Japanese culture that we sadly lack in the west. There is a thing called “Kawaii”. I think it translates as something like “cute”. Not so sure about people in their 30s and 40s, but it’s completely normal to see people in their 20s going around with “cute” things like Hello Kitty handbags, watches, jewellery etc. Maybe older generations there do find it immature, I don’t know, but it seems to pretty accepted. There seems to be a recognition that wearing cute things doesn’t make a person a child, rather that it just means a person likes to have fun.
I kind of feel lucky in one way – my choice of alternative fashion seems to be more acceptable as a subculture these days. I love geek stuff – sci fi clothings, accessories etc. It’s seen as “weird” and different still, but us geeks are thankfully now seen as just “alternative” rather than as childish or freakish.
Thankfully I think too we’ve come a long way since 2004 – nowadays it seems it’s not just accepted but popular to read fantasy (and sometimes even science fiction!). Things like Harry Potter, Hunger Games, Divergent, Star Wars, Star Trek etc are no longer just seen as light entertainment for children and immature weirdos, it’s now recognise (at least by thinking people) that these books are full of rich themes for adults as well as children.
Sadly I think though society hasn’t progressed at all in my lifetime on the issue of autistic behaviours and mannerisms. In work situations I often get treated as if I’m intellectually disabled, unqualified, uneducated etc – having anxiety/panic attacks in work situations as well as the aspergers, really, really doesn’t help the situation either. I often have to bite my tongue and not say “I have three degrees, an IQ of 178 and experience that you will never get in your entire life – do not judge me because I’m shy, nervous and awkward!”.
In some ways, I think I could even handle being treated like a child. I find it very hurtful to professionally be treated as if I have an intellectual disability or uneducated. At least when being treated like a child (as I’ve also had happen in the past), the person doing it at least seems to think you can learn and grow (even if they arrogantly think that “learn and grow” equals “become like them”). But being treated like you have an intellectual disability or uneducated generally means the person doing it thinks you can’t learn – either because you can’t change your intellect or because you’ve willfully put your self into a situation without proper education. I hate it.
And I find it’s even worse in situations when dealing with important non-work related situations. eg dealing with medical professionals (especially mental health), government organisations, etc. I’m sick of being treated like as I’m stupid and uneducated for things like using simple language (eg saying tummy instead of stomach, etc) particularly as I have a brain problem (which ironically I can’t remember the name of) where I can’t think of the correct word for things – like if it’s a noun, I can describe the object but cannot for the life of me think of it’s correct name, or if it’s a verb, I can describe the action, but again, cannot think of the correct word for it. Having high IQ but having serious memory problems means people think I’m either slightly below average intelligence or slightly above average intelligence but speaking less intelligently for attention. Annoys the hell out of me! I have an IQ good enough for mensa but have a very simple memory problem – I’m not faking, period – and do not do anything for attention.
But other than the whole language/ intellect thing, I hate how particularly with health professionals, rather than treating me like a child, instead I get treated like a hypochondriac attention seeker who is making up stuff for attention and exaggerating minor problems. It takes years to get tests (the hand and wrist specialist I saw in the public system a month actually said to me “If you’ve been having problems for 20 years now, why are you only just booked into have surgery next month” – I had to explain to him that because of my terrible experiences with doctors starting 23 years ago, I only sought help ten years ago, and have been stuffed around by incompetent specialists for the ten years since, only finding one that is both competent and respectful last year). I had so many GPs and specialists misdiagnose my serious knee problems – apologising once I’m crippled for life due to the delay in treatment doesn’t take away the damage or pain.
It’s even worse in mental health. As you know yourself, women with autism are frequently misdiagnosed with personality disorders for years before they finally get diagnosed with autism (IF they get correctly diagnosed ever). Throw in having a mental illness like bipolar or schizophrenia (or any mood or psychotic disorder) with autism, and the chances of getting diagnosed correctly is slim, and the chances of getting a correct initial diagnosis is practically zero. I’d rather be treated like a child, rather than being treated like an attention seeking fake when seeking help for depressive episodes. At least the last fool “professional” who did this apologised once I was better and he could see it was a depressive episode and not a long term thing (like personality disorders are) but again, an apology after nearly dying, having to quit my dream job, and basically missing out on my child’s first 5 months of life due to constant dissociating during that time… well an apology simply doesn’t make up for what I lost because of many mental health “professionals'” inability to differentiate autism from personality disorders in women. What’s worse is, him being a work colleague, noticing how I behave at work (100% professionally, which is a lot more than I could say about his registrar and some of the other staff), he should have known me better, especially as at one appointment he commented on how he’d checked out my behaviour at work during one shift a week or so earlier to assess me in a non clinical environment (well I suppose a hospital is clinical, but he wasn’t seeing me as a client, I was there for work) and talked about how he was very surprised about how professional I was, not at all what he was expecting (considering I spent my appointments with him talking about my depression and PTSD and related symptoms). Anyway, he eventually apologised a few months after I started seeing someone else, got the treatment I needed that he hadn’t provided – but only after I made an informal complaint (still tempted to make a formal one but scared of the career repercussions of making a serious complaint about a top consultant).
But anyway, sorry for the long reply… it’s something that has been on my mind the last few days as I recover from surgery last week and the comment from the other wrist surgeon a month ago about why has it taken 20 years to get treatment when I’ve struggled so much for so long – just how often in the medical profession that women are dismissed as “hysterical” – either exaggerating or outright lying for attention when it comes to physical and mental health when compared to men. And for us women with autism, being even more different from the stereotype of the “typical patient” than neurotypical women, we struggle greatly to get the help we need for both physical and mental health problems.
It’s sad we live in a time and place where medical treatment is not based on medical need, but rather it is based on patients/clients acting the “correct” way that health professionals expect someone with that particular health condition “should” act. So yeah… I think I’d rather be treated like a child than crazy or a liar or even an exaggerator. But whether it’s being treated like a child or crazy or a liar, it’s still not acceptable way to treat people with autism simply because we are different from neurotypical.
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I too am asexual and ive not had full on sexual experiences personally but the act of sex isn’t the same as ones identity anyway it is who one is attracted to sexually guys, girls, both or no one (no one being asexuality) http://www.asexuality.org. So yeah asexuality is higher in ASD but it is not exclusive as the blog says there is a whole gammet of sexualities in ASD just like the mainstream population. I too find it irritating when people ask me if I live at home etc as I have lived out of home for 12 years now. It is time the world accepted ASD adults as exactly that adults and accepted everyone choice if one wants to have sex or a relationship that is fine but if they do not or do not feel attracted that too is fine.
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Every day we wake up to knew challenges, for me it is the realization of a spinal injury that magnifies other disabilities. for the past few years I have tried to find my place and how i fit. Vocation Rehab has not helped very much and honestly in my state, they do not believe in cognitive stimulating positions. I have dealt with Asperger’s, PTSD, and the Spinal Cord injury on my own.
Do this lead to me getting into Art Therapy, have a Degree In Psychology helped with that. I also started to write. Picking up projects i had put down because people had told me, they weren’t worth anything. I had developed a new passion for working with people with disabilities. Currently I am Substitute Teaching and working to becoming certified in SPED.
The reason honestly I am reaching out is because I am wanting a writer’s perspective. I have restarted one of my books. It is a story of a teenage who’s life circumstances end him up in a treatment center. I have worked in a few of these centers. My original idea work to write this in memory or honor of those kids; someone brought up that i should make the book very raw in issues and bring out the mental health aspect of the book. To do this, I have gotten creative and in short, broken the “forth wall of fiction”. I have not only the main character telling the story from his perspective but, he is also interacting with the author from time to time through out the book.
I have ran into a “English Nazi” whose has told me I am breaking to many “rules”. It is really difficult for me not since she has told me that i have not been able to write or even block the book and characters. I have and English minor but it focused on Literature and so I learn to love the “heart and passion” of the written word. I am trying to paint a picture, a piece of art, that show the heart of a kid that is a “Romantic”. It doesn’t help i have forgot how to write in MLA. My words, my art, is raw and emotional. Unfortunately i have realize what is in my mind, head, and heart as pure emotions; at times are not conveyed in written words. Thank you, Asperger’s!
I do believe it is important that I finish this book because, it can impact many individuals. I am writing to help give a voice to those that may not know how to understand there emotional states. Right now, I just don;t understand how to stop analyzing that my works aren’t good enough. I am writing for any suggestions.
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Hi there and thank you for your comment.
Your book idea sounds great. Ignore the ‘English Nazi’ – often breaking ‘rules’ and conventions leads to a more meaningful narrative.
I wish you all the best with your project
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This post, and the two comments above, need to be printed onto a pamphlet, titled ‘Autism 101 for NTs’ and distributed to every mailbox. This has got to be the most frustrating part of daily interaction. Like communicating isn’t hard enough already?!
I will add some credit to the Victorian hospital system for having better trained staff than in the 90s. Well, the ones I have encountered anyway.
We need an Autreat in Oz. A place we can sit and watch glitter filled poles spin their lovely colours, blow bubbles into the wind, make a band of clicking noises and beat boxing, wear cosplay, flick our fingers or flap our arms AND IT IS NOT CHILDISH, but normal.
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