My son wrote this

Damian wrote this story at school shortly after a visit from his two-year old cousin Lily and her family. I love this story for several reasons. It’s accurate, it’s funny (from an parent’s perspective) and it’s impressive (for a five-year old).

‘On Saturday, in the afternoon, my cousin came to my house. Her name is Lily. Her Dad’s name is Kim and her mum’s name is Wendy. Wendy’s baby is called Abigail. Lily pooed all over the ground. There was also poo on her leg. She was also snatching toys and saying mine, mine, mine and she tried to snatch a toy off me then she fell down.’ She fell down because she slipped in her poo.

damian's story black back

Damian was diagnosed with Asperger’s Syndrome, at three years of age. It was no big deal to me, because I have Asperger’s Syndrome too; it’s our normal. However, I intended to do everything I could to set him up for success (happiness, self-worth, belonging, achievement etc.) in life. In addition to having weekly appointments with a speech pathologist to help learn play skills that would benefit him for pre-school/school and advice from a child psychologist for his anxieties when needed, we engaged the services of an occupational therapist in anticipation of potential difficulties Damian may have with fine motor skills, especially handwriting.

While all my primary school classmates graduated with a ‘pen license’ (awarded after a certain level of neatness was achieved), I was the only one in my class who did not. Thank goodness I did not take the license too literally otherwise I would still be writing with grey lead pencil today. Yet my handwriting is a huge improvement on my husband’s handwriting, which he sometimes has trouble reading himself.

Some people may say ‘It’s a boy thing’ or ‘It’s an Asperger’s thing’ but Damian has put an end to that myth of the origins of poor handwriting in our family. While the input from the occupational therapist assisted Damian with developing an interest and confidence with his handwriting, I think that he inherited his neat handwriting skills from my mum. Out of my immediate family, only my brother David had previously adopted my mother’s lovely handwriting skills, but now it seems that Damian has too.

Let’s face it, this post is a ‘brag’ post; it’s a celebration of how thrilled I am that my son has had a successful first year at school against all odds (the odds being what the literature tells you to expect for a child with Autism and from what I experienced as a child).

Damian enjoys school. His teacher told me that he has been a pleasure to teach, he has a best friend and plays regularly with several other friends. He even once complained that everyone wants to play with him at school. As if that wasn’t enough, he recently confided in me that he has a girlfriend (I confirmed the meaning of the word girlfriend with him too). I didn’t have my first boyfriend until I was in my 20s.

I am so happy that Damian has had a wonderful first year at school. I expect there will be challenges in the future, as for any child, but this first year has given me a boost of confidence. I’m glad we prepared well for school because it showed me what is possible for Damian. My pessimism has been replaced with optimism for his future school experiences and I could not be happier.

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“You are more affected by autism than me”

My teenage cousin Lucy (not her real name) randomly said to me one day “I think you are more affected by autism than me.” Her socially inappropriate remark made me want to laugh. My immediate unconsidered thought was that Lucy was definitely more autistic than I was.

Instead of laughing, I tried to be tactful and replied “You can’t really say that someone is more affected than someone else because the strengths and challenges of each person with autism are different, like you are really good at music and I am really good at… other stuff” (I had trouble coming up with something specific and tangible in that moment). My conversations aren’t brilliant at the best of times.

Lucy was pensive for a minute and added “Oh yeah, I have meltdowns (and you don’t)”. Shortly after that, I found myself thinking that Lucy is a lot more observant than me and that I struggle to express myself verbally and so perhaps I am more autistic than her.

Then I realized how hypocritical and spurious it was for me to try to compare myself to Lucy. Autism or ‘no autism’, how can anyone compare themselves to another person in terms of their overall functioning; strengths or challenges? Not to mention the 20 year age gap between us.

Perhaps you can compare individual skills and talents but Lucy’s comment made me realize that I should reconsider using generalized categories of ‘high-functioning’ or ‘low-functioning’ with respect to autism. Why? Because descriptions of individual abilities of each person with autism is more accurate and respectful than categorizing their ‘functioning’ as if it applies to all their abilities.

I have recently entered the world of blogging and have been thrilled to find many autism and disability activists eloquently writing about concepts that resonate with me but I have also found it overwhelming. I have always been anxious about offending people and it is so easy to offend people when there is so much at stake. Nerve endings are raw and for good reason; for too long people with different abilities have been discriminated against unfairly.

I am happy to use whatever terminology suits people best because I care about how they feel but it is impossible to suit everyone when different people prefer different terminology. I visited a great blog site called ‘Yes That Too’ recently, where the blogger stated emphatically that she prefers to be referred to as an ‘autistic person’ and not ‘person with autism’ and this the case for many autistic self advocates who prefer identity- first language (I’d urge you to click on the link above to find out why). However, there are others who prefer to be referred to as a ‘person with autism’ (person first, autism second) and I am one of those people*.

We have many different identities. To me, I am me. I am Rachel, I am a collection of identities; autistic traits, neurotypical traits (because yes we have some of those too), roles that I fulfill, hobbies and interests that I have, opinions and beliefs. I don’t like having one of those identities taken out and put before my name or ‘personhood’ (after ‘person’ perhaps but not before)*.

With regard to my autistic identity, I am a person with a ‘more different than average’ way of thinking, I am a person with autism and I am autistic. It can be both ‘autistic’ and ‘with autism’. I like Judy Endow’s take on this (she wrote something even better than this that I loved but I can’t find it)*.

Right now, I would be ok with being referred to as an ‘autistic person’ blogging about autism or as a ‘person with autism’ blogging about autism but if it was in everyday conversation I would prefer ‘person with autism’. It would make me feel strange and uncomfortable for everyday people in my life to consider me as autistic first and foremost*.

I will adopt the language preference of whoever I am conversing with or talking about (because that is the respectful thing to do and I also ‘get it’) but generally for a wider audience, such as while blogging, I will mostly use person-first terminology because it fits the terminology used in journal articles that I often quote from and because it is more familiar for people with a basic understanding of autism and this is the target audience of my blog, those starting out on the journey. Ultimately and personally however, I am most comfortable with using the terminology of ‘having autism’ because I am comfortable with thinking of it as ‘having’ a different way of thinking** and because many people may not be able to see beyond ‘autistic person’ and see the whole multi-faceted person that I am; their equal. It’s a risk I can’t allow myself to take…yet. I’m only part-way through the journey myself*.

Aside from how one chooses to identify oneself, I’m now strongly convinced that categorizing people by their overall ‘functioning’ does not seem logical and could easily offend those who are categorised as ‘low-functioning’ or even ‘high-functioning’. Alyssa from ‘Yes That Too’ explains it simply but effectively “High functioning means your needs get ignored. Low functioning means your abilities get ignored”.

Addition

I’ve been thinking about how to explain how I identify with autism a lot recently especially after reading this.

“I have autism” or “people with autism” is at odds with most autistic self advocates. Quite rightly, autistic self advocates are furious when told they should not refer to themselves as “autistic” because it is not using person- first language. However, in their attempts to blog about the inappropriate and offensive way that they are told how they should use language to identify themselves they do exactly the same thing to me. How can someone say on the one hand that person-first language is a “logical fallacy” and then in the next breath say but if you are autistic you should identify how you feel comfortable?

One of the comparisons used to explain the limitations of person – first language is by comparing it to other identities to show how language is used differently specifically for autism (the premise being that the language used for autism more closely resembles the language used for disease states rather than for identities and autism is not a disease) so I decided to use the same approach to explain how I feel without having to include (much) logic.

My name is Rachel McNamara, it is the name I have had for as long as I can remember. When I got married I did not want to change my name because I identified with ‘Rachel McNamara’ and did not feel comfortable changing it. Whenever, I have to fill in forms, I tick the ‘Ms’ title but if I had an option I would prefer not to tick a title at all.

I prefer not to describe myself as a ‘straight person’ or an ‘Australian person’. If I was explaining myself according to my sexuality or nationality, I would say “I’ve only ever liked men (colloquial expression not meant to be taken literally) and “I come from Australia” because that’s the way I feel most comfortable saying it.

However, if someone said to me “I am a gay person” I would not feel comfortable describing myself with similar language. If they said “I am an Australian person” I would not feel comfortable describing myself like that either. I would refer to them that way because it is their preference but I would not refer to myself like that because it is not my preference. Similarly, if someone said to me “I am an Autistic person” I would refer to them that way because it is their preference but I would not refer to myself that way because it is my preference*.

If I was bringing the topic up with someone whose preferred language I did not know, I would say “I have autism” because that is how I feel most comfortable saying it. When writing about autism generally I will also say “people with autism” or “people without autism” because that is how I identify (I do consider autism to be part of my whole identity) so my preferred language extends to my general discussion of the topic. I dislike the rhetoric of ‘burden’, ‘disease’ and ‘cure’ just as much as the next autistic self advocate*.

The way I choose to use language is influenced by many factors but in the end it is my choice and based on how I feel most comfortable. It should not need a logical or facts based justification.

In the end, person-first language and identity- first language both come from a place of merit. You can use the terms and not apply the concepts behind them (which is not being true to the language) or you can not use the terms and still apply the concepts behind them. It is the concepts that are most important. However, it is important to be sensitive about adopting the language of the person who are communicating with because it matters to them more than you can imagine.

Notes

*A year on from writing this post and my preference is identity- first language. Why? Because of all the points others have made in favour of it, I have gotten used to it (change usually takes a while to get used to) and it is more congruent with activism. I consider myself to be an autistic activist.

** I also think of autism as a disability. It can be both a difference and a disability when the environment discriminates against difference as in the Social Model of Disability.

Image courtesy of Mr Lightman / FreeDigitalPhotos.net

The Santa Threat

Every year, during the last week of school, I sit my boys down with pen and paper for them to sign Christmas cards for each of their classmates. ‘Card giving’ seems like a thoughtful friendly thing to do so I consider it a good social learning experience for them to sign and hand out cards to all the kids in their class.

I am secretly relieved that not everyone chooses to take part in the voluntary tradition or I would feel the need to confiscate half their haul of candy canes and other treats for the sake of their teeth. In fact, many of the sweet treats that come with the cards do find their way into the nearest bin when my boys have forgotten about them.

Jeremy (my seven year old son) got to work signing cards immediately. He made a list of his classmates and ticked them off as he went. Jeremy loves lists, so he was in his element.

Damian (my five year old son) had a shorter attention span and had only signed three cards by the time he got up and started playing again. I asked Damian why he had only signed three cards and he replied that he only wanted to give Christmas cards to the kids he thought were not (ever) bad in class. This sounded familiar to me, it sounded like the ‘Santa threat’.

Many parents, who give presents to their children from Santa, have used the Santa threat at some time or another. It goes something like this “Santa won’t bring you any presents if you are naughty”. Ingenious isn’t it. Originally, the idea came from the proverb that you would only get a ‘lump of coal’ for Christmas if you were naughty during the year and this was then cemented into Western culture with the hit song ‘Santa Claus is Coming to Town’

‘Santa Claus is Coming to Town’ is an American Christmas song, first performed in 1934. It is a pretty catchy tune with some wonderfully useful lyrics that include:

‘He sees you when you’re sleeping

He knows when you’re awake

He knows if you’ve been bad or good

So be good for goodness sake’

I have used the Santa threat myself in the past, in a desperate attempt to encourage my children to go to sleep at a reasonable hour on the night before Christmas. I have also heard the threat being used regularly in public and private spaces alike during the month of December each year and I smiled in collusion with the parents using it.

Damian had justified cutting short his card signing activity by adapting the ‘Santa threat’ to suit his own means. Nice try Damian. My response to Damian was to explain to him that the ‘card giving’ was about him, showing how friendly and thoughtful he was and not about the person who you give the card too. It was about making other people happy and think well of you rather than representing what you think of their general behavior.

That made me wonder whether the ‘Santa threat’ had somehow maligned the good character of Santa, given that his generosity was supposedly conditional.

There are several flaws to the use of the ‘Santa threat’ that I can see at first notice:

  1. It may be sending the wrong messages to our children i.e. that more socially competent children are more deserving of our kindness
  2. It is unlikely to be followed through with i.e. an empty threat and therefore once discovered as such will be rendered useless
  3. It is a missed opportunity for other equally effective yet more positive behavior management strategies (refer here).

Given my latest epiphany, let’s see how long I last before pulling the old ‘Santa threat’ out of my box of tricks. Although, now that Jeremy takes melatonin before bed to help him sleep, I may not use it after all.

To all the muddled mums and dads out there

It was Monday morning and we were ‘running late for school’. My two boys were usually very good at getting ready for school because I had established a simple effective routine for them. Unfortunately, as is often the case, it was me that was responsible for us having to rush out the door.

As usual, I had tried to fit as much as possible into my morning before driving my boys to school. This morning I thought I would have enough time to load and start the dishwasher and the washing machine, before we left. These are jobs that could be done later but if they are done before I get home it is psychologically easier for me to organize my day. There is nothing less motivating than coming home to dishes and dirty clothes piled up everywhere.

Yes, I know I could have done all those chores the night before but frankly after my boys have gone to bed, I prefer to allow myself to ‘veg out’ on the couch and watch TV (pre-recorded so that I can watch a show that I like, when I am ready too and I can fast forward through the advertisements). It’s good for my mental health to have some ‘me time’ at the end of the day and that is what works for me.

I had an appointment for our new second-hand car’s roadworthy check (required for change-over of registration) for immediately after the ‘school drop off’, so I had to use that car to drive the kids to school. After rushing out the door, I quickly transferred the boy’s car booster seats and safety harnesses from our old car to the new one, something I should have done earlier. A rogue strap hanging from one of the boosters got stuck in the door and I carelessly yanked it out in a hurry, miraculously without breaking anything.

Jeremy attached his own safety harness while I packed the school bags in the car boot. I love that my boys are becoming more independent. I wasn’t sure if he would do it himself but I’ve recently realized that ‘running late’ is a fabulous time to test my boys capabilities because while I am busy concentrating on ‘not being late’ they don’t rely on me to intervene to help. I heap praise on Jeremy for being so helpful and independent.

I go to put the car into reverse gear. I haven’t driven an automatic car in years and really should have tested it out before the morning rush. “Uh oh, why won’t it reverse, it’s going forward…” (talking to myself). I look at the schematic representation of the gears on the gear stick handle but it doesn’t help me. I assume that I am in ‘first gear’ but I can’t adjust the gear stick any further left to where it should be.

My high-pitched exclamation of “What on Earth is going on?” starts to panic my boys and Damian asks if he can get out of the car. I try to reassure them “It’s OK, I’ll figure it out, don’t worry” hmmm good advice, deep breath.

I call my husband (who is already at work) “Thank GOD you answered! How do you put this car in reverse?” “Pull the plastic casing that is around the gear shaft up while you move it into position” Very unusual and very phallic, but it works. Why design a car like that? Why?  Someone’s idea of a joke?

We get to school two minutes late but at least I can write ‘car trouble’ as an excuse on the boys’ late notices. If I had have been more organized this morning things would have gone a lot smoother and we wouldn’t have been late. However, I’m allowed to be imperfect. I’m human and I’d had a very busy week the week before.

The day before, I had driven my cousin Kristen (not her real name) back to her home in the country; a seven hour round trip. My cousin had come to stay with us for the week as an alternative to ‘schoolies’. Schoolies is a newly emerging tradition in Australia, where students who have just completed secondary school, go on a week-long holiday with hundreds and thousands of other teenagers, in a city location away from their homes. The media enjoy displaying video footage of drunken teenagers stumbling around the city streets at night and getting arrested.

Throughout the week, Kristen and I went from one activity to the next; museums, zoos, shopping centres, markets and cinemas. We had one ‘rest day’ where we baked biscuits and cupcakes for Kristen to take back with her to share with her family. I burnt half the biscuits but the cupcakes all turned out well.

By the end of the week, I was dropping breakables, putting car keys through the washing machine and forgetting to put perishables back in the refrigerator. You get the picture. Regardless of my depleted mental capacity, it was worth it. Site-seeing had been a valuable and enjoyable experience for Kristen and I.

After returning to my usual routines for a few days and a hefty dose of quiet contemplation, I knew that my excessively muddled self would return to my somewhat muddled self and the mistakes would reduce in frequency. It was a process that I was used to.

You don’t always have to learn from mistakes. The greatest lesson I have learned from my years of experience with mistakes is that they happen, just like the expression “Shit happens!” Mistakes might be more likely to happen under some circumstances, such as when you are most busy and could least do with them, but that is OK too.

Don’t give yourself a hard time about being muddled; it’s so much more fun to laugh about it.

Embrace your weaknesses because they confer you with strengths

Sigh. I pull over and get out my mobile to dial my sister’s number. She greets me with “You’re lost aren’t you”. I have driven to my sister’s house over a dozen times since she moved out-of-town but to me the country looks the same wherever I go, grass and fences, cows and sheds. It’s not just the country; the city looks the same too, gardens, fences, houses and buildings.

This sort of thing happens to me almost daily and it started from an early age. As a teenager, my aunt remembers me slowly wandering back and forwards down the main street of the small town I grew up in, until she approached me and asked what I was doing. I said I had to meet my mum at the hairdressers but had forgotten where the shop was. My aunt was in complete disbelief that I was unable to find the hairdressers that I had gone to all my life.

When I leave a store with the goods I went in to buy, I expect to come out completely oblivious as to which direction I need to go in. When I return to the car park, the only reliable thing that helps me find my car is the colour and letter coding system that I have taken care to memorize. When I drive home, I have to snap out of my daydream and remind myself exactly where I was going.

My mother told me that her worst fear for me was always that I would get lost. I am wise enough to avoid deserts and forests, but otherwise I realize that getting lost is not that big a deal.

Getting lost has improved my confidence for asking strangers for help in any situation; I am often shown the kindness of other and it also allows them to feel good that they have helped someone out for the day. I don’t panic when I get lost because I am so used to it and I always allow myself plenty of time to get somewhere. Those people who expect a smooth trip to their destination are always much later to arrive than I am.

You’d think I’d get an iPhone with a Global Positioning System (GPS) application and/or install a GPS in my car but clearly getting lost is a flaw that doesn’t distress me that much. I have developed coping systems to deal with getting lost that actually confer me with strengths and experiences that other people may not have. It all evens out in the end.

Wright vs Right: Autism $peaks is Completely Wrong

Wrong is not the word I’d choose, although it fits nicely Suzanne Wright’s name (cofounder of Autism Speaks). The word discrimination (ableism) would be more accurate. Autism Speaks have had plenty of opportunities to promote respect as well as awareness of autism; instead they have chosen the path of fear and intolerance. There are plenty of other organisations more deserving of the publics support and corporate sponsorship (details in the link). Please take the time to read and sign the petition to give ‘Autism Speaks’ less power because they refuse to listen to the voices of people with autism (ironic given their name).

Thirty Days of Autism

AS vs Reality 5Please stand with the Autistic community and those who love and support them…

Please visit the change.org Petition to the Corporate Sponsors of Autism Speaks.

Please sign and share widely, along with the other the links at the bottom of this post.

Please feel free to share and use the images in this post to support this project, and note I have included a template for the comparison images to help others understand why we are standing against Autism Speaks.

Please, if you haven’t yet, take the time to read this letter written by co-founder of Autism Speaks, Suzanne Wright, Autism Speaks to Washington – A Call for Action. (Trigger warning – I’d suggest you consider of reading this hateful link when young children/teens are away from the screen)

Screen shot 2013-12-04 at 11.11.04 AMWright is WrongScreen shot 2013-12-04 at 11.35.02 PMScreen shot 2013-12-04 at 12.34.17 AMScreen shot 2013-12-04 at 10.59.13 AM* Find out more about Boycott Autism Speaks: http://boycottautismspeaks.com/home.html

* Sign the petition: http://www.change.org/petitions/corporate-partners-supporters-of-autism-speaks-terminate-your-financial-support-of-autism-speaks

* The Autism Women’s Network…

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