Talking to kids in the classroom about Autism

I had an awesome day today. My son Damian has been very anxious attending school recently for a number of reasons, which we are seeking appropriate help for. It occurred to me that it might help him to feel more understood by his classmates if I had a chat to them during class about Autism, diversity, difference and disability.

Initially, Damian was concerned that I would be telling the class all about him. He is very conscious (and rightly so) about people talking about his vulnerabilities. So I asked Damian if I could talk about my Autism (I am Autistic) and Autism generally and then mention him briefly at the end. He was much more keen on that idea. I let Damian read what I was going to talk about and he was very happy for the talk to go ahead. I will paste the talk below (and the kids’ answers and questions in brackets – at least the ones I can remember).

When the day of the talk finally came, Damian was as excited as I was to be talking about my favourite topic, only his reason for being excited was because I was his mum (he is only 7 years old; his classmates are 8 years old) and I was going to be talking about how being different was cool.

After the talk finished, Damian told me he loved it. He had sat wide-eyed at my feet and completely focused for the entire talk and this is a boy who was also recently diagnosed with ADHD. When I asked if he thought the other kids had liked the talk too he said that they might have been more interested in the toys and books* that I shared around.

I think the talk was well-received by both the teacher and the kids in the classroom. There was lots of interest in what I had to say and I was very interested in what they had to say too. There were some great discussions. The kids of tomorrow are going to rock this world!

Good morning everyone,

Some of you may already know me but for those of you who don’t, I am Damian’s mum. I have come to visit you today to talk to you about being different especially one type of difference called Autism. Can you say the word ‘Autism’ with me? Saying it out loud will help you remember it. Try it now. 1, 2, 3, “Autism”.

Before I start talking to you about difference, I am going to hand around some books about being different and you can flip through the pages quietly while I am talking and look at the pictures. I will leave the books in the classroom for the week, if you want to read the books but for now I just want you to look at the pictures and share the books around to others in your class.

A word some people use to mean difference is ‘diversity’. Can you say it with me? 1, 2, 3, “Diversity”. What does that word mean again? Can anyone tell me? (No-one could guess except Damian who said “Black people who aren’t treated well by white people!” I said that skin colour was one example of diversity and gave a few more examples. Some of the books I had shared around had themes of racism in them.)

Diversity, which means being different, makes the world a better place. Imagine if everyone was exactly like you, looked like you, liked the same things as you, wanted to borrow the same library books as you and brought the same things to ‘show and tell’ every week. Imagine how boring and even frustrating it would be.

In this world, there are lots of different people working and playing in different ways to make things more interesting, fun and better for all of us. We are pretty lucky that there are so many different, interesting and exciting people and things for us to do in the world.

You will notice in some of those books that some differences are differences that we can see. Some of the people in those books wear glasses like me, some have guide dogs, some use wheelchairs to get around, some people have brown skin and some people have white skin, some people are young and some people are old, some people live in different houses and some people wear different clothes.

But some differences cannot be seen. Can anyone guess what difference I might have that you cannot see? (One child guessed different blood-type, which I told him was a great guess because you can’t see blood- type. Another few children guessed other things that could be seen. Finally, I let my son answer because he already knew the answer.) That’s right, I am Autistic.

Even though I am different because I am Autistic, I am also a lot like you and I was even more like you when I was younger. I used to like playing with friends, swimming in our own swimming pool, climbing trees, riding bikes and reading books. Sometimes I was happy like on my birthday and when I played with my younger cousins and sometimes I was sad like when other kids teased me or I fell over.

In fact, everyone in this room has some things the same as each one of us and other things that are different.

But because I am Autistic, I am even more different to you in some ways. Kids and adults who are Autistic may sometimes do or say things that are a lot different to most other people their age because our brains work differently sometimes. Soon I am going to read you a book that will explain how our brains work and think differently.

Some things about Autism are really great and those things are different for each Autistic person. I like that Autism helps me to say and spell lots of really big words like ‘Autism’ and ‘Diversity’. Autism also helped me to be great at maths at school, whereas other Autistic kids found maths hard but found that Autism helped them with art or music or writing or certain sports.

People with Autism can sometimes be just as different to each other as you are from each other but there are some things we have in common and this is explained in this book ‘Inside Asperger’s Looking Out’.

‘Asperger’s’ is just another word people used to mean Autism. People don’t use the word ‘Asperger’s’ much anymore so I am just going to use the word ‘Autism’ instead of ‘Asperger’s’, wherever it is written in the book.

While I read the book to you, I’d like you to put your books upside down on your lap or on the floor and pass around these squishy toys to squeeze and stretch gently while I read. Kids and adults who are Autistic often use toys like these to help keep them calm when things are getting difficult for them because sometimes it can be hard being different. Many other people find the squishy toys relaxing too.

(I read the book but skipped a few pages because it’s very long. I asked the kids about what the ‘senses’ were before reading the pages about how our senses can be different and one very smart girl answered the question better than I could. I also paused on other pages to clarify.)

Does anyone have any questions about the book? (A couple of great questions were asked like “How do you know if you have Autism?” and “Where does Autism come from?” Of course, I answered relating it to my own experience.)

You know, I am not the only one in this room that is Autistic. Autism is something that you are born with that is passed down from your parents or grandparents or other relatives. So Damian, who is my son, is also Autistic. You might notice that sometimes he finds things easy that you don’t and sometimes he finds things harder than you. It is important for anyone who is different to be understood and treated well especially when they are finding things hard.

Our school classrooms and playgrounds can sometimes be difficult for kids who are different because they are not made in ways that suit them best. They often have too much noise for us, too many bright lights or too much movement and this can stress us out. It is called ‘disability’ when our classrooms, where we work and live and the rest of the world is not built to support our different abilities.

Can you say the word ‘disability’ with me? 1, 2, 3 “Disability”. Our buildings and the way we do things is built for most people but not all of us and we need people to make our schools and lives easier by changing things to make it easier for all of us. It’s only fair.

Can you think of ways we could change the classroom or the playground to make things better for kids with disabilities like Autism or any other disabilities that you can think of, so that it is better for all of us? (There were some great answers to this question. Some about not teasing or bullying kids who are different and some about having quiet areas that kids can go to.)

Now you can understand why some people and kids look or act differently and you can just be cool about it. It’s cool, it’s Ok to be different and we need different people in our lives and in the world and we need to remember that even though Autistic kids can be different they are also kids just like you who want to play, learn and be treated well.

(Then the classroom teacher asked the class if they found squeezing the squishy toys helpful for listening. Many of the kids did. The teacher said that he finds that if he draws patterns while listening he finds it helpful to listen and learn and he asked the children if anything helped them to learn better. A couple of kids answered.)

*These were books that I bought for my boys to read at home to increase the diversity of their bookshelves. I have reviewed many of them in previous blog posts here and here.

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Ableism and homicide

“The media tend to report on hearsay… and not facts. They take pieces of a story or a perception of a story, link them together and then use engaging and emotive language to sell their own interpretation of a situation. The circumstances of what happened that day are unknown. The Police have not released any information…I think we, as a society, need to have respect for the family and the community who are experiencing something we could never imagine…Who knows what, why or when it occurred. I hope this doesn’t offend you. I too stand up for and speak up for people with disabilities and who experience DV (domestic violence) in families of all shapes and sizes.”

I had posted an article written by Stella Young, on my Facebook page, in the wake of an alleged murder/ suicide, which occurred several towns removed from where I was raised. The article was a damning criticism of the media’s response to it. Stella Young wanted to bring to our attention the ‘victim blaming’ rhetoric that was used by the media with respect to the murder victim’s disability and so did I.

The message above was sent to me by someone I love so I decided to remove the post for her sake, with massive feelings of guilt that I’d also committed a social fopar and caused people more pain. FYI the family were not Facebook friends of mine nor to my knowledge were any of their friends. One person commented that she knew friends of their friends and that they were grieving (implying that I should not have posted it).

This year in Australia a unique campaign against domestic violence was started and it has received significant media attention. It is referred to as the ‘Counting Dead Women’ campaign * and it gathers statistics on women as they are murdered. They report it immediately as it happens. The point is, this is happening now. Why do we need to wait a certain amount of time before commenting on it? As Emma Watson, UN Women Goodwill Ambassador, said in her speech during the launch of the ‘HeForShe’ campaign “If not me, who? If not now, when?”

Let me tell you something, I have never been a victim of domestic violence. However, if my husband ever kills me, I want everyone who ever cared about me to condemn his actions not sympathise or empathise with him.  If anyone refers to me being autistic as an additional stress on the relationship, I would like someone, anyone, preferably everyone to be ‘calling it out’ right away. Because ultimately, I will be the one who’s feelings should be considered foremost above the murderer and above the family and friends.

Over six months has passed since I posted Stella Young’s article and nothing more is reported nor will it ever be, as it is no longer news. However, Stella’s words still stick with me: “Some media have reported that police believe it was more than likely the ongoing strain caused Geoff Hunt to snap”.

Some of you will buy into the story that the burden of caring for a person with a disability could very well be a mitigating factor in any murder/ suicide. But there are by far more carers that do not murder or abuse the person they care for. I put to you that it is sexism / ableism/ racism in fact a long list of isms and phobias that are by far the mitigating factors. When the victims of domestic violence in Australia are predominantly women, with an even higher proportion of disabled women and indigenous women being abused, a pattern emerges. The statistics are similar in America for disabled women and women of colour.

It would be nice if everyone understood intersectionality. Intersectionality, as a concept, helps us to understand how the consequences of discrimination get greater for you when there are a greater number of things you can be discriminated against. Ultimately, the odds are not good for your mistreatment if you fit within more than one category of oppression within society (National Coalition of Anti-Violence Programs: Hate Violence Report).

A parliamentary research paper on the Domestic, Family and Sexual Violence in Australia determined that

“The full extent of violence against people with disabilities is unknown, but it is estimated that women and girls with disabilities may be twice as likely to experience violence as those without disabilities. Women with disabilities are particularly vulnerable to physical, sexual and psychological violence due to their situation of social and cultural disadvantage, and increased dependence. There are particular forms of abuse that are unique to people with disabilities, such as removal of an accessibility device, withholding medication and threatening institutionalisation. Adults with intellectual or psychiatric disabilities are particularly at risk of sexual assault and exploitation. When the abuser is the main carer, individuals suffer neglect, isolation and intense vulnerability to abuse; it may be impossible for them to get help.”

Note that no-where in this report do they say that it is the “burden” of caring that leads to an increase in violence against them but that women with disabilities are more vulnerable to violence due to their situation of social and cultural disadvantage and that there are additional forms of abuse available for them to be exploited by.

Thanks to the scare campaign about autism, led by Autism Speaks, autistic children are particularly at risk. We are essentially being told by Autism Speaks and compliant media that to be a carer is a burden that can lead us to murder. It’s almost beyond belief that Kelly Stapleton was given a platform to humiliate and blame her autistic daughter who she attempted to murder, on the American talk show ‘Dr Phil’.

Making excuses for murder no matter how well-meaning, effectively accepts it as inevitable thereby unintentionally condoning it. As Jess from ‘Diary of a Mom’ so eloquently explains when a life is devalued by violence it is time to judge. I contend that if we don’t judge privileged violent offenders and worse still if we judge the victim, we are complicit in supporting systems of oppression that exist within society in it’s very worst expression.

*and in an ironic twist, disabled women have been excluded from this campaign (refer here for details). This just helps demonstrate the depth of the problem.

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.

 

 

 

 

The stigma of mental illness and violence, a personal account


My eyes are not standard-shaped, I’ve worn glasses since I started school. My optometrist referred to my eyes as egg-shaped but my mum insists that they are almond-shaped. I’ve got my fathers eyes and now I see that my almond eyes will become blood-shot and my eyelids will puff up and redden with age. He was attractive in the few photos that my mother kept of them after she left, but time and circumstance had worn him down; nights without a roof over his head, poor nutrition and health care.

He said “You didn’t want it to be me, did you?” I quickly denied it but he was right. I felt instantly ashamed that I had not wanted him to be the one, for those few minutes. I had seen him standing there at our prearranged rendezvous point, on the steps of the city post office. In that bustling place, he was the only person standing still as if waiting for someone but we hadn’t thought to describe each other and he did not look like my father so how could I know. I stood frozen to the spot, scanning the crowd wondering if my father would turn up, trying not to make eye-contact with the nervous unkempt stranger 5 metres to my left.

On the phone, my father had sounded very well-educated (as he is). The handwritten letter that he left in my mailbox revealed that his writing and grammar were beyond fault but he was shabbily dressed, a result of either his poverty and/or disinterest in appearance. At least he looked warm, I was glad he was not cold. I had come straight from my temporary locum job, which had brought me interstate to where my father lived. He commented on how much he liked my coat and how smart I looked (dressed in my work clothes).

He tried to explain his absence from my life but his explanations didn’t add up. My father had a long history of mental illness, of which he appeared to be in denial. He told me he thought the doctors weren’t telling him the truth about his health. Perhaps they didn’t know the full truth, perhaps it included autism (like me and my sons) but I did not know about autism back then.

He invited me to his one-roomed unit for dinner one evening, he had prepared a very hearty stew. He only had one set of utensils to eat with so he gave me the fork and he ate with the spoon. I tried to make conversation, I wanted to know what he thought about the world, I wanted to know if we had things in common but my conversation skills were very poor and hindered by unspoken truths.

Then, he suggested we go on a road trip together to Port Arthur as he had always wanted to go there. The only thing I knew about Port Arthur was that there had been a horrific and well-publicized massacre there several years earlier. The Port Arthur massacre was carried out by someone (I chose not to use his name because of the danger of affording murderers celebrity status) who was reported by the media (incorrectly, although I didn’t know it at the time) to have had Schizophrenia. I became very nervous about the idea. Why did he have to choose that place of all places?

Actually, I was even nervous just going to his place for dinner. I was aware for many years that my father had been diagnosed with Schizophrenia so I was very interested in finding out more about it when I was younger. I had read several books from libraries about the condition and remembered reading somewhere that people with a diagnosis of Schizophrenia could become violent to those closest to them.

Even though my family assured me that my father was never physically violent, he was essentially a stranger to me and fear was always very close to the surface for me; I couldn’t help feeling concerned for my safety. My fear was also fuelled by an unfair bias informed by popular culture against people with mental illness. I quote the following from the Editor’s summary of a very informative review of the literature (Fazel, 2009) which confirms that the assumption that Schizophrenia predisposes a person to committing violence is misleading:

‘These findings indicate that schizophrenia and other psychoses are associated with violence but that the association is strongest in people with substance abuse and most of the excess risk of violence associated with schizophrenia and other psychoses is mediated by substance abuse. However, the increased risk in patients with comorbidity was similar to that in substance abuse without pyschosis. A potential implication of this finding is that violence reduction strategies that focus on preventing substance abuse among both the general population and among people with psychoses might be more successful than strategies that solely target people with mental illness.’

It is not mental illness but drugs and alcohol that predispose violence. My father did not appear to be to have drugs or alcohol in his life from what I could observe and no one ever mentioned drugs or alcohol as part of his history so my fears were completely unfounded.

In the article, Discussing evil: The problem of “Us” and “Them”, Soraya explains how we enable ourselves to feel more secure and safe by attributing violence to a certain type of person such as someone with a mental illness; those we refer to as “others”. We can then be safe in knowing that no-one we choose to associate with could do something like that and that if we could just cure or quarantine those “others” that present a threat to “us” then we have an easy solution to the problem. But this is firstly not the case and secondly just encourages stigma and violence towards people with a mental illness or other labels.

My father was probably aware that I wasn’t comfortable with the idea of going with him to Port Arthur (possibly my face went pale and conversation halted) even though I did not directly say no. I feel that this unspoken rejection and prejudice may have informed his ensuing behaviour.

The next time I tried to contact my father he did not answer his phone, I went to his unit and knocked on the door but he did not answer. Instinct made me think that he was home. I called his phone from the door and he answered and said he was too unwell to come to the door.

A couple of elderly women who lived in a unit downstairs had heard me knocking on his door. They asked me who I was and if they could help me. I explained my concerns and they gave me the number of his case worker who assisted all the residents.

The case worker informed me that he had a diagnosis of Paranoia and Severe Depression, there was no mention of Schizophrenia. She asked for my contact number but my locum job was almost over, I couldn’t see how I could support him from interstate and it seemed he didn’t want my support anyway. I offered my Godmother’s number instead (my aunt, his sister).

Fifteen years later, I had lost all contact with my father but my exploration of my past had reignited a desire to contact him again. I wanted to share with him that he had grandchildren, I wanted to share what I knew about autism and see if it could help him to come to terms with how he relates to the world (like it did for me).

I felt that if my father wanted support (which he might not) that I was in a position mentally and financially to help him. I wanted to try to connect with him again. This time I thought I could do better, this time I had better social skills, this time I had more life experience, this time I had more to offer him.

After many phone calls, I was given a likely address for him and I wrote him a letter. I had my husband edit out anything that might scare him off (too honest, too weird etc.) and I included photographs of my sons and I.

I have not heard from him, I’m not sure if I ever will but I feel a weight removed from my shoulders. It was also an unspoken apology for unspoken feelings and prejudice.

For more information on the myth of mental illness refer here and here.

For an interesting article on schizophrenia and identity refer here.

Acceptance

Jeremy attended a kindergarten birthday party when he was almost 4 years old. I went over to check how he was going and another parent told me that he was impressed because Jeremy had tried to spell out his name (when asked what his name was) because he knew that the parent wouldn’t be able to understand him. Unfortunately, Jeremy couldn’t pronounce many of the individual consonant sounds either, especially the ‘J’ so he was still unable to be understood.

Jeremy had never babbled as a baby and rarely cried like other babies, instead he grunted and grizzled and later pointed. He picked up a few words early on but then stopped using them. When Jeremy was 2 years old, a ‘maternal and child health’ nurse suggested that Jeremy’s difficulty communicating could be responsible for some sleep and behavioural concerns I had about him.

The nurse put me in touch with a  publicly funded speech pathology service in the area, which was much less expensive than private services. I referred to Jeremy’s new speech pathologist (K) as the ‘talking doctor’ to Jeremy and explained that she would help to teach him to speak and Jeremy was very interested and excited about each visit. He also made dramatic improvements after each visit.

I recall generally that K mentioned that I should speak in less complicated language such as “Jeremy up?” instead of “Would you like me to pick you up Jeremy?” I think also Jeremy wanted to learn how to talk and it was almost like he was made aware that he could talk just by having a ‘talking doctor’.

Unfortunately, when Jeremy finally started to use speech he only spoke in vowels because he couldn’t pronounce consonants, which meant it was extremely difficult to understand him and added an extra element to the speech therapy. In addition to his speech diagnosis of expressive language delay with idiosyncratic error processing difficulties, Jeremy received a diagnosis of Autism Spectrum Disorder (autism) at 3 years of age. Given that Jeremy now had a diagnosis of autism he was no longer eligible to see that speech pathologist, so we switched to M.

One by one, M helped Jeremy pronounce each consonant sound. It involved manipulation of the mouth and tongue and practice saying the words alone and in sentences. The words were on worksheets with a picture matching each word. It took a month or more for Jeremy to learn how to say each consonant, until we got to the ‘Ch’ and ‘J’ sounds.

M tried so many strategies to isolate the ‘Ch’ sound but after a years worth of trying Jeremy still couldn’t pronounce it (I think the way he tries to pronounce it is called lateralization). His tongue just refuses to move in the right way to produce the sound. It’s incredibly difficult to learn how to make this sound when it doesn’t come naturally.

Jeremy always found the speech exercises difficult and disliked them as a result of his lack of success with the ‘Ch’ and ‘J’ sounds. I tried many things to try to improve his inclination to practice. I used reward systems, constructed certificates and colourful sheets with words and pictures that would interest him more than the boring ‘black and white’ sheets. I also purchased various speech pathology applications on the iPad (Articulation Station by LittleBeeSpeech was particularly good). Often there would be improvements for a while but eventually the novelty would wear off.

Jeremy would cry from time-to-time when told it was time to practice his sounds and he would complain of being tired and pretend to yawn. He would wriggle and fidget endlessly and avoid eye contact (something he usually didn’t do). He practically climbed all over his chair during the sessions.

M and I praised Jeremy regularly, acknowledged how he felt, explained what we are doing and why and how long it would take. We also gave him fiddle toys (sensory) to squeeze and stretch but Jeremy still had difficulty coping with the sessions. I would have preferred to have a longer appointment but with breaks in between but M only did 30 minute sessions. If you do the math her fee was 3 dollars per minute…tick…tick…tick.

I always sat in on the speech pathology appointments. I found myself willing Jeremy to make the right tongue and lip movements and often copied what M was doing so that I could be familiar with it too. If someone was watching us through our lounge room window, they would probably think we were in training to compete in the mouth movement Olympics, pursing and pouting our lips and curling our tongues in deep concentration.

Jeremy and I were both at our wits’ end with just the mention of the sound ‘Ch’. It had become traumatic for both of us. I got frustrated because I just wanted him to practice, I didn’t care if it wasn’t perfect but Jeremy couldn’t cope with ‘getting it wrong’ and had developed a strong aversion (probably anxiety-related) to ‘sounds practice’.

Jeremy had such success with M in the past with other consonants that I although I had considered it, I didn’t want to change speech pathologists for a long time. I kept thinking “We are nearly there, just one more sound” It was like being near the end of the finish line in a marathon in a bad dream, you can see the finish line but you seem to be running on the spot.

I asked M one day if there were languages that exist where you didn’t have to pronounce the ‘Ch’ sound and would that mean that Jeremy would no longer need speech pathology. She said yes. Damn the English language for needing a ‘Ch’ sound!

I explained our predicament to Jeremy’s paediatrician and she recommended another speech pathologist, so I have put Jeremy on a waiting list for this new therapist. However, Jeremy is 7 years old now and after 5 years of speech therapy I am worn out, Jeremy is worn out and we are glad for the break.

I previously assumed that Jeremy would be able to articulate all sounds accurately with ongoing speech therapy but now I’m not convinced. I had recently asked M if it was realistic to expect that Jeremy would eventually be able to pronounce ‘Ch’ with therapy and she seemed to think he should. M said that “only those with severe apraxia of speech” may always have difficulties pronouncing sounds even with speech therapy.

However, with a little investigation of my own it seemed that even though treatment efficacy of speech disorders has generally been shown to be effective this does not mean that you can expect all children to show improved intelligibility or communication functioning with treatment. In addition, all the articles that I have briefly skimmed through tend to stress ‘improvements’ not ‘gaining speech with no obvious phonological differences to their typically developing peers’. I feel that M raised my hopes a little too high.

I have recently been doing a lot of reading about autism from blogs by disability activists and I have learnt a lot from them. In the case of Jeremy’s speech, I am leaning toward a healthy dose of ‘acceptance’. To really understand what is meant by ‘acceptance’ with regard to autism, I encourage you to read pages 10-13 of the first issue of the ‘Parenting Autistic Children with Love and Acceptance’ magazine.

I brainstormed the pros and cons of speech therapy and wrote them on a piece of paper (roughly, within a short time, as the thoughts came to me) with the intention of discussing it with Jeremy. Jeremy is a very smart boy and I think that exposing him to these concepts is appropriate for his level of understanding (which is high).

However, I didn’t put one of my fears on the list (that I didn’t want to expose him to) and that is the potential for workplace discrimination in the future. My fear is that he may be overlooked for promotion or employment in the future. It happens.

Pros and cons of continued speech therapy for Jeremy

N.B. You’ll notice that I put ‘Discrimination and Bullying’ in the ‘Cons’ column and you may think it doesn’t belong there. I actually put that there subconsciously and later thought there is no way I could justify putting that in the ‘Pros’ column anyway.

I asked Jeremy to “come over and have a look at something important that he has a ‘say in’”. Then, when he was next to me, I pointed to the sheet of paper and said “This is about speech therapy. How do you feel about that?” His bottom lip dropped and my bottom lip dropped in reply and I said “You feel sad” and gave him a hug.

I said “I have written a list of all the reasons supporting speech therapy and all the reasons against speech therapy” and I pointed out that there were more reasons in the ’don’t do’ or ‘Cons’ speech therapy column (to let him know that I could see it was a problem for us). We read through the columns and I asked Jeremy what he thought we should do. He said “I don’t know”. I said “How about we try a new speech pathologist after a long break and if you still feel the same after a few sessions we can stop it? We can also help children who are different including those who speak differently by defending them if they get teased” (refer to earlier post on bullying). Jeremy was satisfied with my suggestion and didn’t seem to want to discuss it any further (he appeared to lose interest).

Jeremy is a privileged child and I need to remind myself of that, if he has an obvious vulnerability or vulnerabilities it can only enhance his empathy for others. One of the greatest gifts autism has given me is the ability to empathise with other people with vulnerabilities (who are likely to be discriminated against). I am less likely to underestimate someone’s competence or what they have to offer me as an equal. I am a true believer that vulnerabilities lead to strengths elsewhere by virtue of the need to cope and our ability to adapt (refer to an earlier post here) and at the very least vulnerabilities do not negate any strengths that a person already has independent of those vulnerabilities.

With the wide range of less obvious characteristics that can be discriminated against (refer here) it is unrealistic to avoid all of them. It is a much more honourable goal to promote acceptance and celebrate diversity than it is to strive for an unrealistic goal of ‘normalizing’ everything, which leads to placing the blame on the person for their differences. Jeremy’s speech is now normal for Jeremy.

I suspect that we won’t be seeing the new speech pathologist for long but it is always worth getting a second opinion. I will definitely be asking for a detailed and completely open opinion about all the likely outcomes of speech therapy for children with a similar profile and history to Jeremy. However, I believe that I already know the answer for Jeremy and I know that I have already accepted, without anxiety, that Jeremy will always have a speech impediment and he will not be alone and it is not a problem. In fact, it is a relief to put an end to what has clearly become a torturous experience for both Jeremy and I.

 

 

FC and RPM

Ariane Zurcher has given me permission to reblog her post on Facilitated Communication and Rapid Prompting Method. Although both my boys and I can speak I like to promote awareness and acceptance of other peoples experiences with autism and Ariane wrote an exceptional account of methods to assist people who are unable to speak to communicate through the typed word and on the importance of presumption of competence, which follows here:

Emma's Hope Book

Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are a bridge to the common goal of independent communication.  It bears repeating – the eventual goal for both is independence.  And yet they are both criticized.  In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words.  Even though no one touches them as they type.  Even though there is no physical contact of any kind as they write.  Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind…

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