The last man standing

Munch, crunch, slurp, burp! That is what I have learned in the past month or so. I’ve been volunteering, for a couple of hours a week, at my sons’ primary school. In particular, I’ve been given the task of helping a student with her writing but I strongly doubt that I’m actually helping.

It turns out that you learn, at the age of 7, how to engage your readers by starting with action words and clues, to some dramatic event. My student’s narrative was titled ‘Mr Mac ate me’. I find this ironic because a year or two ago, I attempted to write an Autobiography (just because anyone can, right?!). I went as far as to source an experienced author to look at a draft of the first few chapters and she was honest with me. She tried to be constructive in the short time she could spare a complete amateur in her busy schedule by telling me the exact same thing those 7 year olds are being taught right now.

I was also told that the story of being Autistic is no longer unique. We are too normal to publish it seems. Oh the irony! The third and final nail in the coffin of my Autobiography (besides not being able to write and being boring) was that I didn’t want to jeopardise any relationships that I have by being truthful about them and without the truth (or more accurately the truth the way I see it) the most interesting parts of my life can’t be told.

And now, I have a conundrum. My most recent blogposts have taken on a different angle because I feel I can no longer blog about the most interesting people in my life, my Autistic sons. Given that my sons’ truths are different to my truth, is it right for me to interpret their experiences and share them with everyone (even for the sake of sharing what I have learned)? Is it fair to them? Is it empathetic to them?

A cousin of mine recently said to me “I miss all those Facebook posts about the funny things your boys say and do. I used to show my friends and they thought they were hilarious”. I wouldn’t have been comfortable with my mum sharing stories with some of her friends, about the funny things I did or worse the personal awkward things and the upsetting things (closer friends I would have been ok with if discussed respectfully).

Maybe there is an age limit where the private stories stop, like when you stop taking nudie pictures of them playing in the bath or something. Maybe, I shouldn’t have started at all. Anyhow, from now on it stops and you are left with just me.

Hi!

(P.S. I’ve reinvented myself on Twitter @rachelmcnamar15 as a retweeter of the writings of others on all sorts of social justice issues. Don’t follow me unless you are seriously interested in social justice and keep in mind that many posts are Australia- specific)

“caregiver burnout”

This blog post by Love Explosions covers an important concept of parenting that is not unique to parenting autistic children and it does so brilliantly. Given that I have not covered the topic of self-care anywhere in my blog, I thought I should share it.

love explosions

"Caregiver burnout" caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member “Caregiver burnout” caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

I dislike the term “caregiver burnout.”  To me, it carries a very negative and connotation about the person being cared for.  It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.

It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children.  And families.  It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member.

The…

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to the autistic people in the crowd

It was a call for autistic people!

It was a call for autistic people!

In my last post ‘Autistic Voices’, I almost congratulated our State organisation’s (AMAZE) attempt at promoting autistic voices in their ‘SPECTROSPECTIVE’ movie project. I barely discussed that several of the videos submitted and shared were from a carers point of view and sacrificed the dignity and privacy of their autistic children (such as Addie’s video here http://www.spectrospective.com.au/gallery-4.html#). It was disappointing that those few videos compromised the message but I was so used to it that I accepted it as inevitable. However, just today I read this blog post by Jess from ‘A Diary of a Mom’ and I realised that AMAZE could have done better. AMAZE called for autistic voices (stories of autism from an autistic persons perspective) so they should have been the only videos shared. Neurotypical people should not be hijacking our voices. Neurotypical people already get most of the attention on the discourse of autism. Neurotypical people could learn from Jess. I could learn from Jess. Keep spreading your words Jess and amplifying ours, we need allies like you 🙂

a diary of a mom

I had made a decision. Before I said anything else, I would say this. Even if it were technically only addressed to 3 out of the 240 people in that room, it mattered. And it mattered that the other 237 hear it.

This is what I said.

I did my best to transcribe the words (below) for those who find auditory processing challenging. Any errors are wholly unintentional.

Thank you so much. Thank you for having me here to all of you and Lisa and Maeghan for all of the incredible that work you’ve done here. I hope you guys can take a minute now that you can breathe and appreciate what you’ve done. This is some pretty amazing stuff. Above all, thank you for ensuring that I am sharing the stage with Michele [Gauvin} who will speak for a few moments later. That’s Saturday, April 4, 2015

” target=”_blank”>really important stuff.

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Autistic voices

Our state autism organisation is called AMAZE. According to their website “Amaze is a member-based not-for-profit organisation and is the peak organisation for Autism Spectrum Disorder (ASD) in the state of Victoria. Amaze represents around 55,000 Victorians who have ASD and work for the benefit of all individuals and their families and to promote better understanding of ASD in the general community.”

To promote a better understanding of autism in the general community is a massive task when there is so much misinformation about it. The AMAZE Facebook Page posts are often followed with passionate comments about the sorts of ‘awareness’ articles they should and shouldn’t post from neurotypical parents of autistic children versus autistic people. A lot of the comments reflect ignorance and fear. The debates are predictable and painful.

Some neurotypical people, such as parents of autistic children, believe that autism is the worst thing that has ever happened to them or that it creates undue stress on their children so they wish their child didn’t have it and they would embrace a cure. Meanwhile, autistic people who embrace their autistic identity, both their strengths and vulnerabilities, feel that their disability arises from a lack of acceptance and inclusion. Not only do autistic people feel that they are undervalued and therefore discriminated against but that they are a likely target for eugenics through the search for a “cure”.

AMAZE will never please everyone but it should be clear which path favours social justice. Unfortunately, social justice has never been an easy path to take. If AMAZE chose to please the majority (a numbers game) they will be catering to neurotypical narratives of autism, which can often be ableist and unintentionally harmful to autistic people through stigma. If they chose to please the minority they are doing right by disability advocacy guidelines “Nothing about us without us” but they will lose popularity and likely donations to further “promote a better understanding of autism” (ironic).

We can support autistic people AND their families while being respectful to autistic people but the task of helping the neurotypical majority to see that seems enormous. It’s almost as though you need to give people a degree in autistic experiences to understand why this is necessary.

Perhaps AMAZE has decided to tackle the difficult path with their recent attempt at doing something different for the World Autism Awareness Day (autistic advocates would prefer the day to be called ‘Autism Acceptance Day’). Instead of the usual march, sporting blue shirts with the latest prevalence numbers printed on them (we are not a number), AMAZE chose to call for autistic people to video record their stories and send them in. The stories were edited and condensed into a 17 minute movie shown at cinemas in Victoria, on the 2nd of April and available to be watched online or by purchased CD.

The initial call was for autistic people to contribute but a few family members chose to speak on behalf of their child/children from their neurotypical perspective and how it affected them as carers, which was particularly unfortunate in the cases where the children were portrayed as a burden. However, the broader message of acceptance was clear enough for those willing to listen.

I chose to watch the movie online, in the comfort of home, with my autistic sons so that I could expand on different concepts that were raised. Much to my surprise and my boys delight, part of my video recording featured in it (at 14:03 min)*. You can view the edited movie and the individual videos at www.spectrospective.com.au. I’m curious to know if you found that it helped you to understand autism from the lived experience and made you question the common narratives of burden, numbers and cure.

*Although my boys were keen to contribute a video recording of their own, my husband was concerned about their privacy, which I respected, so they did not contribute.

The Grief of the Privileged

Grief as defined by Wikipedia is “a multifaceted response to loss, particularly in response to someone or something that has died to which a bond or affection was formed”. However, it is the grief of “expectations lost” that I am most intrigued by. Specifically, the expectation of giving birth to a “normal” or “typical” baby.

When I learned that my first born was on the autism spectrum, I did not grieve. I was relieved to have an explanation for his differences, luckily an explanation that I had just become personally familiar with. Yes, I felt lucky to share the diagnosis with my son, so that it was our normal. At worst, I was concerned that he would be socially isolated and develop lifelong anxiety and depression like I did but I didn’t wish I had another child instead of him and I certainly didn’t grieve for any unborn child.

Later, when I ventured into social media territory, I became bombarded with ‘gloom and doom’ rhetoric about autism that frankly made me feel like a less worthy person. Each word was a microaggression drilling little holes in me; burden, cure, hate, missing, stolen and grief. These days, it is so common to hear the rhetoric of grief being associated with diagnosis of autism that it becomes expected and I’m not the only one who doesn’t appreciate it.

Something I learned during my adult life when attending couples counselling is to always validate each other’s feelings (when I said “but it’s not logical” about my husband’s feelings, to the psychologist, it got me referred for additional counselling). So I was torn between validating others grief of the unborn child and somehow processing my feelings of unworthiness about their grief that were just as valid.

Then, I remembered a post by a transgender blogger titled ‘Transition is not death‘ and I remembered about the white lesbian couple who gave birth to a black baby and sued the sperm bank (read the last paragraph of this article about it) and I realised that we shared one thing in common. The children were lesser privileged than their parents in each case. The parents grief, although valid, was prejudiced. Do you know many parents who grieved that they gave birth to able-bodied, cisgender, heterosexual white children instead of another ideal?

In his article, ‘Don’t Mourn For Us‘ Autistic Advocate Jim Sinclair says “Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real…but it has nothing to do with autism” and he stresses the importance of grieving “away” from the autistic child.

I would add that part of that process of managing your grief should involve acknowledging the culturally learned aspect of grief whether it comes from ableism, sexuality prejudice, genderism or sexism or even physical attractiveness or intellectual ability etc. Not only should this be acknowledged to yourself (and for your social media audience when you refer to your grief) but also that you should openly challenge those prejudices and help to create cultural change so that one less person is duped into false expectations.

In the words of Jim Sinclair: “The tragedy is not that we’re here, but that your world has no place for us”

Fairness, Anxiety and Disability update

Following my realisation that a discussion of privilege was warranted to change Jeremy’s (my 8 year old son) perspective on fairness, I decided to create a questionnaire to expose how people are treated differently based on appearance. The questionnaire and discussions that followed are below:

Questionnaire:

Illustration

A group of children with different appearances are pictured standing together smiling. A boy sits in a wheelchair toward the front of the group. A girl in a pink shirt stands next to him.

A group of children with different appearances are pictured standing together smiling. A boy sits in a wheelchair toward the front of the group. A girl in a pink shirt stands next to him.

Image obtained from http://esl-multicultural-stuff-page4.blogspot.com.au/p/diversity.html

Question 1.

How comfortable would you be saying “hello” to the girl with the soccer ball if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the head scarf if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy wearing the blue shirt (who is standing) if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the yellow shirt if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy wearing the red shirt if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the boy in the wheelchair if he said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

How comfortable would you be saying “hello” to the girl wearing the pink shirt if she said hello to you (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 2.

How much would you like to play with the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

How much would you like to play with the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 3.

If you needed help with your school work how likely would you be to ask the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

If you needed help with your school work how likely would you be to ask the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 4.

How likely would you be to share your food with the girl with the soccer ball (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the head scarf (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy wearing the blue shirt (who is standing) (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the yellow shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy wearing the red shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the boy in the wheelchair (out of 10)?

1              2              3              4              5              6              7              8              9              10

How likely would you be to share your food with the girl wearing the pink shirt (out of 10)?

1              2              3              4              5              6              7              8              9              10

Question 5.

Which child or children do you think would most likely become a doctor when they grow up?

 

Which child or children do you think would most likely become nurse when they grow up?

 

Which child or children do you think would most likely become a teacher when they grow up?

 

Which child or children do you think would most likely become an athlete when they grow up?

 

Which child or children do you think would most likely have children when they grow up?

 

Which child or children do you think would most likely become prime minister when they grow up?

 

Which child or children do you think would most likely become a scientist when they grow up?

 

Which child or children do you think would most likely become an astronaut when they grow up?

Question 6.

Who gets treated the best? More hellos, more play, more food etc.

 

Who gets treated the worst? Less hellos, less play, less food etc.

 

The person that gets treated the best is the most privileged. What things about them made you decide to treat them better?

Boy or girl?                                                          Yes/no

Clothes they wore?                                            Yes/no

If they could do things like you?                      Yes/no

If they looked like you?                                     Yes/no

Other: 

Question 6.

Do you think they way you treat people based on how they look and what you think they can be when they grow up affects what they think they can do and therefore what they end up doing? Way too confusing, question failed.

How do you think they feel about that? Do you think that is fair?

What could you do to change that?

Discussions of questionnaire:

I explained the questions and gave no sign as to the preferred answers. I just noted their answers as they went along. Some answers were surprising in that they thought the boy at the back of the image had a disability but they couldn’t explain what it was (perhaps because his facial features seemed less symmetrical and his head was turned to the side). Once the boys started to realise that they weren’t treating people the same (based on some of the later questions) they started to get upset and wanted to change some answers.

Jeremy was more comfortable in general with saying hello to everyone, asking for help with school work and playing with everyone in general. For Jeremy, there wasn’t a significant difference in the ratings between the children (even though they varied I couldn’t detect a pattern) but the girl in the pink shirt and the girl in the head scarf appeared to rate lower in general for both Jeremy and Damian. Damian even said that he didn’t think the women with the head scarf would have any of the jobs and Jeremy said “Yeah, me too”. Damian was more likely to feel comfortable saying hello to and playing with boys. Jeremy and Damian chose boys as most likely to have the higher paying occupations of scientist, astronaut and prime minister.

I asked Damian why he chose boys for specific occupations and he said the jobs were “a better fit” for them but he couldn’t explain further. I asked if he thought boys were smarter than girls and he said “No”. I said “Do you think women could do those jobs?” and he said “Yes”. I told Damian and Jeremy that they are among the very privileged in this world. They are treated better because they are boys, have white skin and are well-off financially. They are less privileged than some white boys because they have a disability (autism) but are still treated very well. I explained that even though we don’t mean to we tend to treat some people better based on sex, skin colour (Jeremy thought it was wrong to say ‘black people’ but I mentioned that many black people are proud of being referred to as ‘black people’), how much money they earn and if they are disabled or not. The questionnaire showed that to be true for them too even though they thought it was important in general to treat everyone equally.

In response to the boys being very privileged Damian said “People in America are richer than us!”. This reminded me of a youtube video that I had watched with the boys before, which pointed out the wealth disparity in America and we watched it again. I showed Damian that a lot of people are poor in America. Jeremy began to realise and say that it was probably the people who were treated worse who were poorest and he specifically mentioned women. He then extrapolated to black people and disabled people (obviously there are many other disadvantaged groups and I will eventually add them all in, in everyday discussions recently we watched this video). I asked if we should blame people for being poor and they both adamantly agreed that we shouldn’t and it was because we treated them worse (they preferred the cup half empty approach then cup half full i.e. treat them worse and not treat us better). I didn’t really know how to discuss what we should do to change this besides being aware and trying to be nicer (pretty pathetic really, but at least a start).

The creation of the questionnaire was inspired by privilege checklists that I came across on the internet when searching for ways to explain privilege to my boys. Another day I will translate one or two of these lists for the boys to build on what they have learnt today.

 

 

 

 

Fairness, anxiety and disability

After the annual ‘Ride to School Day’ (where I fell off my scooter) our school introduced a monthly ‘Ride to School Day’. Jeremy, Damian and I have participated in it several times since (with me on a bike not a scooter). Each time that we have done it has been somewhat stressful for me (and my boys but they still insist on doing it) not because of the risk of injury but because of the risk of meltdowns. What usually happens is that one boy insists he wants to turn around and go home and the other boy insists he must and will go on.

Although, my boys have many strengths they also have some challenges due to their unique autistic traits. Traits that make participating in events that test their endurance more challenging than for many other children. Jeremy has anxieties around order, routine and doing things the ‘right way’. Damian has many anxieties about things he perceives to be dangerous and has greater sensitivity to touch, pain and internal discomfort. Regardless, of how their challenges affect them on these events they insist on doing the ‘Ride to School Day’ anyway.

This morning, Damian initially said he didn’t want to do the ride, which was fine by me. I said reassuring “That’s fine your Dad can drive you to school with the school bags”. Of course, as soon as he realised that he had the choice he changed his mind and with a sharp intake of breath I said “Are you sure? I don’t want you to come if you are going to complain the whole way.” He was sure.

So off we went and the usual challenges ensued. Damian scratched his leg on the bike pedal (no broken skin) and stopped to whine about it, both boys kept trying to overtake one another and got upset about whose turn it was to lead and Jeremy complained about tired legs but ten seconds later was riding too close to Damian saying he was going too slow. I had offered 3 tokens (to add to their reward charts) for a ride without complaints and reminded them to good effect until…

50 metres before the bridge Damian stopped and refused to go any further. It was a very well-built wooden bridge with thick wooden pylons and planks. I’ve never seen a more sturdy looking wooden bridge before but it was high up over a body of water (an inlet) and from a distance may have looked imposing. We had all crossed this bridge many times before. In fact, before, it had been Jeremy and not Damian who was nervous about it.

Damian insisted he wanted to go home. I offered another token for crossing but to no avail. I explained how safe it was and how he had crossed it many times before but fear was resolutely setting in. I recognised that Damian had passed the limits of effective coaxing and external motivators. I could have offered him 20 tokens and scientific evidence from a construction engineer and it wouldn’t have made any difference.

I tried going on ahead without him. I thought, if he sees Jeremy and I on the bridge he might realise it is safe. I even jumped up and down to illustrate the point that it was safe. It didn’t work. I called Andrew on my mobile phone and he suggested I carry him across. However, the idea of it only intensified his feelings (I guess carrying him would make him even higher off the ground). I thought if we go back home we will be very late for school and Jeremy will refuse to go back anyway and become just as upset as Damian so I had no other option.

I told Damian that I was going to have to carry him against his will because we had to go to school and that he would never have to cross that bridge again after that. I picked him up and carried him to the bridge. Once on the bridge, I put him down knowing that finding that nothing awful was happening it would reassure him a little. He was still very anxious but I held his hand and he walked with me while I constantly reassured him until we got to the other side.

Jeremy had been so helpful just by being understanding and patient and I told him as much and how much easier it made things for me. However, when we got to the school and I confirmed that they’d both be getting their full quota of tokens, Jeremy was less understanding. Jeremy didn’t think it was fair that Damian could complain so much about the bridge but still get just as many tokens as him. Jeremy is very insistent upon what he considers as fairness.

Fortunately, I had explained to Jeremy before about Damian’s anxieties and how it made things harder for him and how we had to be understanding of his disability (not penalize him for it). Crossing that bridge was extremely difficult for him but he did it, so he gets the tokens. His complaints were expressions of great distress in this case and therefore didn’t count. Jeremy knew how distressed he was. In the future, it would just be Jeremy and I doing the ‘Ride to School Day’*.

Anyhow, now it is clear to me that I need to have a bigger discussion with Jeremy (and Damian) of what it means to be privileged (not just disability) and the social model of disability so that he can challenge his perception of fairness. Wish me luck. I’ll let you know how it goes.

*we can’t avoid a bridge on the way to school, the alternative way includes a road bridge and Damian is equally terrified of riding on the road.