The thoughts of One Autistic Person

[oneautisticperson]

Okay, I get it. But can we also...

This day, the 1st November 2023 will be the last Autistics Speaking Day. This day started back in 2010 as a day for Autistic people to flood the internet with our messages and thoughts. While I have been very busy with my work, I thought I would contribute one last entry.

Okay, I get it.

Planning meals with me around is hard. I am so restricted in what I am able to eat and it is an annoyance. Good chance I can’t eat anything at that restaurant, I won’t eat anything from take-away shop etc. Guess what? It is an annoyance for me to. One of my workplaces has a work lunch coming up and I have to weigh up whether it is worth going. It is at a restaurant I have never been to and doesn’t seem to be located near places I know I can eat at so I can’t just get there early and grab something to eat somewhere else first. I would love not to have this problem. To not have to bring emergency food when I leave for a trip, to not have to eat beforehand when I go to most social gatherings.

But can we also…

Talk about the fact that when my best friend and I made pizza at her house for the first time, I nearly cried because I am rarely included in meals to that extent?

Mention the comfort that familiar foods bring me? If I am having a bad day, I know exactly what I need. It is not just eating the food but also the familiar smells.

Discuss that the same reason that makes food difficult for me brings me so much joy in other ways? My tolerance and enjoyment of show rides for example. Removing one would likely remove the other so I will take the good with the bad.

Okay, I get it.

I see you rolling your eyes when I try to talk about something that interests me. Show rides, neurodiversity, autism, Ned Kelly etc. You have heard me discuss this before and it is boring.

But can we also…

Mention that I have had to listen to you talk about basketball or other things a lot as well?

Discuss how great I feel when I find someone to discuss show rides, neurodiversity etc. with? Online groups in particular have been great with this.

Okay, I get it.

You find my tendency to withdraw rude. I spend too much time alone or with my cats.

But can we also…

Discuss that the noise is too much for me at times? Why must the tv, radio or Spotify always be on in the background? What is wrong with silence?

Discuss that my withdrawal also helps me socialise. It is a balance. I just don’t have the energy to socialise all the time. Withdrawing for a time means I get some recharge time and can socialise more afterwards.

Mention that being alone can be fun as well as beneficial?

Okay, I get.

You feel the need to tell me your perspective all the time.

But can we also…

Discuss my perspective. Discuss my strengths as well as my limitations. Discuss what makes me happy.

There has been attention on moving away from discussing deficits and instead discussing interests and strengths when working with autistic people. This needs to go beyond professionals and be common for families, friends and the wider community.

Written by oneautisticperson aka Leeanne Marshall

[oneautisticperson]

Autistics Speaking Day 2021: A challenge for Academics

Well, it is the 1st of November 2021. Hence, Autistics Speaking Day 2021. A day in which autistic people (and some allies) all over the world will be posting blog posts, uploading videos and circulating other content about whatever we think is important. In some of my previous posts, I have challenged myself, disability service providers and teachers to do better in specific areas. This one is a challenge to academics, specifically academics that teach autism related university/college courses.

 A colleague of mine in the disability sector is doing a Master of Education degree in Inclusive Education. Of particular interest, she did a topic specifically about autism spectrum earlier this year. She found the topic interesting and informative. This is great and I am not disputing that she gained a lot from the topic. However, we had conversations about it that I found ….. discouraging. For example, the topic did not mention neurodiversity, the neurodiversity paradigm or the neurodiversity movement at all. A problem in my opinion given these terms are so often discussed among autistic people both online and in person. Similarly, the topic made no mention of the double-empathy problem but did discuss theory of mind/autistic people having difficulty with theory of mind. Again, I see this as problematic given that the double-empathy problem is often discussed among autistic people.

 At the same time this was going on, I had been asked to record a lecture for a new topic at the university I work for. The topic title included the term neurodiversity and the lecture I was asked to present introduced students to neurodiversity (and related terms) as well as autism spectrum. This topic had a medical textbook we were referring to (and critiquing) each week. It was so easy for me to critique the textbook! Like the topic my colleague was doing at another university, the textbook mentioned theory of mind but not the double-empathy problem and there was no mention of neurodiversity. In addition, the textbook went through potential causes of autism spectrum based on research but made no mention of the fact that a significant number of autistic individuals do not want the cause of autism to be found. Dates and symbols that are important to the autistic community, such as the rainbow infinity symbol and autistic pride day (18th June) were also missing.

 Basically, what was missing from both the topic that my colleague did and the textbook used for my topic was autistic viewpoints and research. The double-empathy problem is something that autistic researcher Dr. Damian Milton, an autistic researcher proposed. Neurodiversity and the neurodiversity movement as phrases were thought up by Judy Singer, an autistic sociologist. That said, ideas regarding the neurodiversity paradigm and movement started much earlier and are thought to originate with Jim Sinclair, an autistic advocate. Recently, current definitions of neurodiversity and related terms come from a blog post by Dr. Nick Walker, an autistic researcher.

 Why is this missing from university/college autism spectrum topics?

As mentioned above, because this is mainly discussed among autistic people and academics have largely not engaged with autistic people when designing autism spectrum topics. If they have engaged with autistic people, it is usually to give a one-off lecture about their personal perspective/experience. I do not deny that this is important (my students at the university say that it is) but we can go further. Autistic people around the world are writing/videoing about whatever we see as important today, some of those autistic people (along with other autistic people that have not contributed to this day) are willing to engage with universities/colleges, to bring the knowledge and perspectives that are currently missing. It is up to academics to engage with these people.

 Why is it important for universities/colleges to include this content in autism spectrum topics?

There are many answers to this question but I will go with my favourite answer. For the students. This semester at the university I work for, I had postgraduate university students. Many of whom had some experience learning about autism spectrum before. Some of these students were learning about the double-empathy problem for the first time. Paraphrased versions of their comments include “very valid way of looking at it in my opinion” and “makes perfect sense.” Why should students miss out on certain perspectives like what is currently happening?

Another answer is for autistic people (and it seems fairly likely that students in an autism spectrum topic will end up working with autistic people). One student in my class just last week had a rant about the state of language used in research articles related to autism spectrum. She was annoyed that the language was very negative for most articles, the language being very deficit-based and terms such as “high-functioning autism” used. I was quite happy this occurred. It gives me hope that my students will not use such language in the future. That maybe the language used to discuss autistic people will change for the better.

 The two reasons above are why I challenge academics to find autistic people that are willing to share knowledge/perspectives from the autistic community and researchers. To engage with these autistic people about what content should be included in autism spectrum topics that is currently missing. To include this content and invite autistic people to present said content.

 We can do better. For autistic people and for our students.

  I have another challenge for readers of this blog post that may not have heard some of the terms used in this blog post before. I challenge you to do some reading.

 To read about:

The double-empathy problem (Milton, 2012): https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.710008

The possible origins of the neurodiversity movement “don’t mourn for us” (Sinclair, 2012 [but first given in 1993]): http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR1/html

Neurodiversity current terms and definitions (Walker, 2014): https://neuroqueer.com/neurodiversity-terms-and-definitions/

Thoughts from the person who coined neurodiversity “what is neurodiversity?” (Singer, n.d.): https://neurodiversity2.blogspot.com/p/what.html

 Written by oneautisticperson aka Leeanne Marshall

[oneautisticperson]

Autistics Speaking Day 2020: It Is Time

It would be so easy to discuss the worldwide pandemic for my blog post. The impact it had (and continues to have) on me despite there being few cases of Covid-19 in my local area (the few cases are all in hotel quarantine). However, I think the world needs some positive news. Besides, it is time. Time for me to reflect and provide an update on my first two Autistics Speaking Day blogposts. To be honest, I have attempted to reflect and provide updates on these posts several times on previous Autistics Speaking Days but each time I either come up with an idea that is more relevant/important or I can not seem to find the right words on the day, leading me to write about something else. Not today though, I am determined to get this positive reflection/update Autistics Speaking Day post done.

 Back in 2012, I wrote my first Autistics Speaking Day post here: https://oneautisticperson.tumblr.com/post/34749796115/autistics-speaking-day-on-communication

In this post, I mention that in the past, I had previously stayed silent on comments that I should have confronted. I challenged myself to speak up if/when these comments were brought up in future.

In 2013, I wrote my second Autistics Speaking Day post here: https://oneautisticperson.tumblr.com/post/65686842050/autistics-speaking-day-my-pathway

I mention in this post that I still needed to work on advocating (communicating) for myself. Another para graph I included was “I do not yet know if I can succeed in holding down a job typically for neurotypicals (a teacher). I am sure however, that whatever my career ends up being, it will be related to education in some way and will hopefully be around including Autistic individuals in general education settings.”

 It is at this point that I once again start thinking about ditching this writing and starting over with another post. I am worried this comes across as bragging, however, I will persist despite my worries. I completed my teaching degree in the middle of 2014 but ultimately, I decided being a teacher was not for me. That said, my jobs, my advocacy volunteer work etc. have all been related to education and indeed, inclusion of Autistic individuals (and people with other disabilities) in mainstream school settings. For starters, I am a casual academic at a local university. I am involved in an autism topic as a guest lecturer, an assignment marker and (sometimes) a tutor. Students in this topic are usually enrolled in teaching, education or disability studies degrees. This means I am influencing current/future teachers and their attitudes towards Autistic people by my involvement in this topic. Importantly, last year I was paid to assist in writing the case studies used for one of the assignments to ensure the case studies seemed to be real, diverse and included a range of issues for Autistic people.

 Since late 2018, I have been part of the Inclusive School Communities (ISC) project as both a member of the steering group and a mentor (young, disabled person) connecting with the project schools. This project is about making schools in South Australia more inclusive for students with disability. Earlier this year, I wrote a report for this project based on two focus group sessions at a South Australian high school. The report went through issues faced by students with disability at school and suggestions for what this school (and other schools) could do to work on these issues, as well as what the school was doing well. I included 9 recommendations at the end of the report for schools. If readers are interested, the report is publicly available here: https://inclusiveschoolcommunities.org.au/news/report-school-student-consultation

 Through meeting each other in the ISC project, two other school mentors and I got involved in advocacy volunteer work. We have had discussions with a Ministerial adviser regarding what needs to be done to make schools more inclusive and to save a local high school that has been making a lot of changes to be more inclusive. I personally also spoke at a rally to save the school. I am pleased to report that the school was indeed saved, a win in 2020.

 So, as you can see from the above information, I have indeed been involved in the inclusive education space (just not as a teacher). As to the other problem I had, well, I am no longer silent when I should be speaking up. In fact, I sometimes worry that I dominate meetings with the other mentors in the ISC project (though they assure me that while I speak a lot, I do not dominate). Overall, I have certainly come along way since 2012-2013. Just goes to show how much personal growth and experiences can happen in 7/8 years. I have certainly done what I challenged myself to do in 2012 and what I wanted to do in 2013. I believe my efforts will help other Autistic people (and other people with disability).

 ……To my readers, I think now it is time for you to do some reflection. In what ways do you make the world a better place? For your local community, for your friends/family and/or for yourselves?

   Written by oneautisticperson aka Leeanne Marshall

[oneautisticperson]

Autistics Speaking Day 2019: On misunderstandings again

Well, it is the 1st November so Autistics Speaking Day has come around again meaning it is time to write my yearly blog post. In 2017 my post was about a lack of understanding on my part about several situations that had occurred throughout my life (Link is: https://oneautisticperson.tumblr.com/post/167004402567/autistics-speaking-day-on-understandings for anyone who is interested). This year, I want to highlight a few situations where non-autistic people have had misunderstandings about the abilities or preferences of myself/other autistic people based on information they think is relevant ….. but is not.

 I am a qualified teacher. I also do a significant amount of public speaking. When I was on teaching practicums, my supervisors from the university would often tell me that the staff at my school placements were worried about me. The staff at the schools observed that I was quiet in the staffroom at lunch and recess (and just quiet in general around the staff). To the staff, this was apparently a sign that I would struggle to speak loudly and clearly to students in the classroom.

 I was and still am somewhat puzzled by this. In the staffroom I have no idea what staff will discuss, I find it difficult to come up with something to say in response to what they have said and I have difficulty knowing when is a good time to say my response. In contrast, when I speak in front of a group of people – whether it be to a class or other setting – I have prepared my talk in advance, I know what I will be saying and I know when I have to say it. For me, these two situations are very different and are not connected.

 The idea that a person must be willing and able to engage in group conversations as a prerequisite for being able to present in front of a group is an assumption being made by some people in the teaching profession. Perhaps this assumption is correct for certain people but it is certainly not true for everyone.

 Concerning preferences, some autistic students prefer receiving information in written or visual format rather than verbal format. This preference will often be recorded in student profiles – as it should be. The problem is that some teachers see this listed preference and make an assumption that the student also prefers giving information in a written or visual format. This assumption might be correct but I have worked with several autistic students that prefer receiving information in written format but prefer giving information verbally. A person’s preferences for receiving and giving information may be different or the same.

 What is my point for this post?

Well the point is certainly not that autistic people always prefer communicating verbally and are fine with public speaking! That is certainly not true. Several autistic people do find public speaking difficult and prefer to communicate via written format in all circumstances. Communication/social interaction strengths and weaknesses are different for each autistic person after all.

 My point is that teachers, parents and other people working with autistic individuals need to critically think about the judgments they are making about the abilities and preferences of a particular autistic person. Are these judgments correct or have these judgments been made based on information that may not actually be relevant (and therefore are actually based on assumptions)? If the latter, how can the judgment be tested to see if it is true or false? I suggest asking the autistic person (and their family if appropriate) but what other ways could be used? The answer to that will depend on what judgments have been made.

 I hope this has given readers something to think about.

  Written by oneautisticperson aka Leeanne Marshall

[geekysciencemom]

3 Myths of "Special Education" - Thoughts for Parents - Starting With Julius

By Catia Malaquias Disability, unlike many other human variables (e.g. wealth, skin colour, culture, religion, language etc) is not usually

“When decades of evidence have shown that segregated education disadvantages students with disability by producing inferior academic and social outcomes in a “low expectations” environment, then it is fair to say that the ‘choice’ of parents to segregate their children in a very real sense can be “disabling” in itself. The failure of Governments and professionals to better guide parents in their decision-making is unconscionable – even negligent.”

[oneautisticperson]

Great article. Also, good to work with Catia on a steering committee for inclusive school communities.

[oneautisticperson]

Autistics Speaking Day 2018

It is currently the 1st November, 2018 meaning it is once again Autistics Speaking Day and time for my yearly blog post. Last week, I thought I would not get around to writing anything. I was out of energy and strangely, feeling disconnected. A week later after plenty of thinking (mainly while having long, relaxing baths), I am feeling okay enough to attempt to write something. This post is not a challenge to anyone (as some of my other autistics speaking day posts have been). It is a post for me to look back on next year should I feel the need to. Hopefully others will find it valuable as well.

 Transitions. Transitions can be hard for autistic people and I am no exception. When I left secondary school and started university, I went from a small secondary school to a much larger place. I remember thinking I was going to faint in some of the lecture theatres, hiding under random staircases around university to get away from people and telling my disability advisor I would not do my study part-time because I hated university and wanted to leave as soon as possible. I was convinced I did not belong at university and would always hate it. That first meeting with my disability advisor was awkward in other ways to. She asked me what I thought I needed on my disability access plan and I responded that I did not know. I relied on the disability advisor at university to tell me what I would likely need, though I did say no to several suggestions.

 I finished my first university degree and started a second one. For the career I had planned on, this was necessary. Despite my second degree taking place at the same university, I again hated the first few months and felt I did not belong. I completed the second degree but realised I needed a new career pathway. I ended up going into a third degree in disability studies, again at the same university. Once again the first few months of the degree was hard (though this time it was made easier by me frequently talking to my lecturers from previous degrees). I also started a casual job for the first time during this degree which caused anxiety. One of lecturers offered to let me go home from class due to how pale I looked. Ultimately though, I am finding the degree valuable (the only part of university I really dislike is writing assessments, research is fine) and I enjoyed the casual job. Once I got through the first few months of major transitions, I was fine.

 What does this tell me? Above all, since my university study is taking a different direction next year and because I am soon taking up more casual work, this post is to remind myself that although I will likely struggle with the changes in the beginning, I will most likely be okay. This is also a reminder that focus on transition for autistic people is important and therefore my study direction is important.

 …..also, Intellectual property and recognition of work are terms that have repeatedly come up in my life this year. As such, I think it is time I put my real name to my blog entries. This post and all previous posts on this blog have been written by Leeanne Marshall aka oneautisticperson (of many autistic people).

[oneautisticperson]

Autistics Speaking Day: On Understandings

So, it is the 1st November 2017, meaning it is Autistics Speaking Day 2017. The following is my blog post on understandings from an Autistic perspective. I hope people enjoy reading.

  I am 6 years old.

I am 6 years old and I am in music lesson with the rest of my class. A person in my class has answered “pig” to a question and it is clearly the wrong answer. I do not find this funny but because the rest of my class is laughing I laugh as well. The music teacher then tells me off for picking on another student. I go quiet and decide to never speak in that class again. 

I am 6 years old and I understand that my music teacher is unfairly picking on me.

  I am 8 years old.

I am 8 years old and in my classroom after lunch on Friday. As usual, I am writing down everything on the blackboard that I had not managed to finish writing during the week. Four other students are also writing down everything they had not finished writing during the week, it is always us. The rest of the students who have finished writing are enjoying free time, doing whatever they want.

I am 8 years old and I understand that I am being punished for not being able to write at the same pace as most students.

  I am 13 years old.

I am 13 years old and have written a story in my English book. Like everyone in my class, I now must type up that story in a word document. I type much slower than most of my class, it is not on purpose I am just slow. Most of the class now have free time on the computer while a few of us are still typing. One of my peers has noticed how little progress I have made and offers to help. Our teacher stops her from helping.

I am 13 years old and I understand my teacher wants me to struggle.

  I am 15 years old.

I am 15 years old and am in a compulsory Home Economics class. Once again, I do not see the point taking this class because I am not going to eat what we have been forced to cook. Once again, the group I am assigned to has just made me wash dishes to get me out of the way and I do not mind. Once again, the rest of my class seems to be enjoying the practical cooking lesson.

I am 15 years old and I understand that I am different from my peers since I am the only person consistently not eating the cooked food and the only person that is happy to just wash dishes.

  I am 16 years old.

I am 16 years old and just got out of my first photography class. I am meant to be taking the photography class as an elective for the semester, but I have encountered a problem. The smell of the photography classroom is bad and I spent the entire lesson concentrating on continuing to breathe. I did not hear one word of what the teacher said and I do not recall the name of the teacher. I make an appointment to see the school counsellor as soon as possible to enrol in a different topic.

I am 16 years old and I still understand I am different since I was the only person affected by the photography classroom smell.

  I am 18 years old.

I am 18 years old and just got back from a follow-up appointment with a neuro-psychologist. The neuro-psychologist told me that I have Asperger syndrome. I immediately start looking up information about Asperger syndrome. I learn about sensory issues and social issues.

I am 18 years old and I understand why I am different.

  I am 23 years old.

I am 23 years old and am completing a teaching degree. In the teaching degree, we are learning about ways to make sure students have completed tasks. It occurs to me that my grade 3 teacher was probably not punishing me for not being able to write as fast as other students. It was probably her method of ensuring I had the necessary information and completed the necessary tasks.

I am 23 years old and I understand that some of my past understandings have been wrong.

  I am 27 years old.

I am 27 years old and I am writing a post for Autistics Speaking Day 2017. As I am writing it, it occurs to me that some of my present understandings are still likely to be wrong.

I am 27 years old and I understand that my understandings may change.

  The reason I have written this post for Autistics Speaking Day is largely because, in the past, I have not understood the intentions of my teachers. This is not my fault since it is hard to know the intentions of people when people are not making it clear what their intentions are. If any teachers of Autistic students are reading this, my message to you is that I hope you are making it clear why certain things in your classroom are happening ....... so less misunderstandings occur.

 The same goes for anyone who works with Autistic people in other contexts.

[oneautisticperson]

Autistics Speaking Day 2016: An Unplanned Entry

Today, the 1st November is Autistics Speaking Day (ASDay) 2016. In the lead-up to today I have been reading through my blog posts for previous years. So many thoughts seemingly swirling through my mind making it hard to focus on, and write about, one thought.

 I actually wrote the above paragraph on the 31st of October. I was trying to write the post that day since I knew today was going to be busy for me. However, I was not able to focus my thoughts and get this entry written. Perhaps this has ended up being positive since I had an experience at university today that I think is worthy of a post on its own.

 To acknowledge ASDay I cosplayed as the character Yugi from the manga and television series Yu-Gi-Oh! to my university class today. The reason I did this was because I have been a participant at the Yu-Gi-Oh! The Trading Card Game Australian Nationals, so I thought cosplaying as the main character from Yu-Gi-Oh! was fitting. I also happen to know that many Autistic people like Yu-Gi-Oh! I have found many of my Autistic friends through participating at Yu-Gi-Oh! Tournaments.

 As I had hoped, the Yugi costume and my reasons for wearing it came up in conversation during class, allowing me to explain ASDay to my lecturer and other students (the course I am undertaking is in disability studies so it is useful for my classmates to know). Another Autistic individual in the class mentioned that her Autistic son also likes Yu-Gi-Oh! so she should introduce us to each other at some stage. I told this person and the rest of class that I found a significant number of my Autistic friends through playing Yu-Gi-Oh! even though most of us did not have a diagnosis of autism spectrum disorder at the time, we got a diagnosis later.

 I did not anticipate someone in the room questioning why I felt the need to mention that a significant number of friends I made playing Yu-Gi-Oh! were Autistic. To me it seemed obvious, I mentioned it because it was fact and because a lot of Autistic individuals do seem to like Yu-Gi-Oh!. His argument was that it did not matter whether those friends were Autistic, Neurotypical (a person whose brain is wired the usual way) or a different form of Neurodiverse person (a person with dyslexia, ADHD etc.).

 To me this does matter. While I appreciate my Neurotypical and other Neurodiverse friends, I have found a true sense of belonging in the Autistic community. Just over the weekend, I was struggling with a certain issue that lots of Autistic people struggle with. I was able to vent about the issue to a Facebook group of all Autistic individuals, some of whom I have met in real life and are my friends. They understood my issue, gave examples of facing similar issues and made me feel like I was not alone.

 That said I get where this person in my class is coming from. In the past, people with disabilities were often segregated from other people and from what I understand, did not have much opportunity to make friends with people without disabilities. Even now, exclusion of individuals with disabilities from the mainstream is an issue (and one that gets frequently talked about in our disability studies classes). I certainly think Autistic individuals should have the opportunity to find Neurotypical and other Neurodiverse friends ….. I just also think that being able to make friends with other Autistic individuals and feeling that sense of belonging to a group is important as well.

 This is not the ASDay post I intended to write but I think it is a valuable post all the same. Perhaps next year I should also make an effort to cosplay as a character for ASDay and see what happens.

[oneautisticperson]

‘Nothing about us, without us’ except.....

“This is a unique situation” “I am in charge and I am autistic so that is not needed” “That only applies in certain situations … this is not one of them” “This is a different kind of decision”

 These are all statements or similar to statements I have heard recently from people who have authority over autistic individuals in various services. The people in authority state their agreement to the Autistic Self-Advocacy Network tag line ‘nothing about us without us’ but come up with an excuse as to why they do not have to follow that statement in specific situations. Some of these people will even tell other people in authority over autistic individuals that they must listen to their clients. I am sure some even think that they do listen to autistic people and value what we have to say because they do listen ….. in certain situations ….. when the person in authority thinks it is necessary or, to be blunt, when it suits the person in authority to listen.

 I have reasons for not wanting to go into detail about the situation that happened recently. That said, the reason I am writing this for autistics speaking day 2015 is that not being listened to when accessing disability services is sadly, very frequent. A few years ago I was part of a social group for autistic women. I hope I am never again part of a group where the person in charge has chosen bowling for an activity and only 4 people actually participated in bowling while the rest of sat and talked at a table because we did not want to go bowling (and of those 4 people, only 2 were clients). I hope I am never again part of a group where we are told we can make our owns rules, because we should have some ownership of the group, but our rules will only apply to certain people and will not be considered to be as important as rules set by the person in charge. I hope I am never again in a social group that ends up being suspended because some of the clients felt so angry about not being listened to that they walked out of the group one session and meetings had to be held in the following few weeks. That said, I do not regret walking out and would do it again if faced with the same scenario …. But this could all have been prevented if we were listened to and had a say in decisions that affected us.

 When autistic people are only given a voice on some issues and decisions that affect us when accessing a service, it means that ‘nothing about us, without us’ is not being fully adhered to. It is a token voice and it gives the person in authority too much power. The person in authority comes with his/her own biases of what they think the service should be like and how the service should be presented (in the case above, the person in authority seemed to enjoy bowling and selected bowling as an activity regardless of the enjoyment of the clients). The person in authority needs to remember that the service is there for autistic clients and the clients should have a say about the service. That does not mean that every suggestion made by the clients should be followed (each autistic person is different after all, and so each client will have different ideas on what the service should be like) but it does mean the clients should always be consulted and have the opportunity to speak or communicate their thoughts in other ways. It also means the person in authority should take time to seriously think about the suggestions being made and not just instantly dismiss them.

 The bottom line is when it comes the motto ‘nothing about us, without us’ it needs to be more than just words. If you are reading this and you in charge of a service for autistic individuals then you should be ensuring your clients involved in that service get a say in every decision that affects them. If you find yourself even now coming up with reasons why that can’t happen then I think you are actually making excuses and I challenge you to change your attitude. This does not mean that you have to go along with every suggestion made by the autistic people you run the service for, there may be reasons why you can not go along with these suggestions but you should listen and be able to thoroughly explain your reasons if you do not follow suggestions. ‘Nothing about us, without us’ no exceptions.

[oneautisticperson]

Autistics Speaking Day: My Pathway

This will probably make more sense if you have read my blog post from last year, located here: http://oneautisticperson.tumblr.com/post/34749796115/autistics-speaking-day-on-communication

  Well it is the 1st of November here in Australia as I am writing this message. For anyone who does not know - that means today is Autistics Speaking Day, a day that some Autistic individuals submit blog entries, youtube videos and more that involve autism spectrum disorder in some form. Further explanation of this day is written in my blog post from last year.

  Given my post from last year and my complete lack of a blog entry since, time for me to share what I have been up to the past year. Since last November I have become a Board Member of the Autistic Self-Advocacy Network of Australia and New Zealand, continued giving guest talks at TAFE SA (college, sort of) to autism classes, joined a reference group for a project looking at autism professional development for teachers in South Australia, spoke to some international guests about my experiences being autistic going through the education system at the request of one of my University lecturers and had several commitments at the Asia-Pacific Autism Conference. These commitments included speaking at a concurrent session panel about my experiences through the education system, performing in ‘History of Autism’ as a cast member of company @ (Autistic Theatre) and being a participant in the future leaders program. It is clear that I have taken opportunities to make a difference through these commitments.

  That stated though, I still do not always immediately communicate my thoughts when I should do so. I have a clear example of a case like this in my head but the whole situation is not an event to be shared with the world for professional reasons. Suffice to say, I still need to work on advocating for myself.

  I guess a significant part of my life for me this year was the Asia-Pacific Autism Conference. Many Autistic people presented at the conference including Ari Ne’eman, Dr Stephen Shore and John Elder Robison, who are all from the United States of America. The future leaders had further sessions with these three guest speakers though I did miss some of these sessions due to other commitments. What was particularly meaningful to me was the different viewpoints that Ari and John had regarding education and employment. John was advocating for Autistic people to create their own jobs and participate in unique education opportunities because quite a few Autistic people can not seem to fit in to typical jobs that neurotypical people do even if they have a University qualification. In contrast, Ari stated that for Autistic people to be accepted into the largely neurotypical workforce, Autistic people must first be accepted and included more in general education classrooms and be seen by neurotypical students. This largely seems to be happening at the Australian primary school level but not so much at the high school level (though every school is different). Basically John and Ari gave me a lot to think about regarding my current involvement in education and my desire to become a teacher.

  So why am I bringing up the conference? And why am I focusing on what John and Ari said?

  The answer to the first question is because the conference gave many Autistic people a chance to share their views and opinions and many Autistic individuals took the opportunity. This was what I wrote about last year. The answer to the second question is because John and Ari highlighted two very different paths for Autistic individuals to go down. For me, John and Ari gave me a lot to think about regarding my current involvement in education and my desire to become a teacher.

  I do not yet know if I can succeed in holding down a job typically for neurotypicals (a teacher). I am sure however, that whatever my career ends up being, it will be related to education in some way and will hopefully be around including Autistic individuals in general education settings.

  …..Because I believe in Ari’s vision. I believe that Autistic individuals should be included in the largely neurotypical workplace and that Autistic individuals have value in such workplaces. I am aware however, that a lot of changes need to occur before this happens, that the employment rate for Autistic individuals is very low and that often the general public are amazed at Autistic individuals who are just University students.

  I had a University class today and for the first time, I chose to wear my Autistic Self Advocacy Network of Australia and New Zealand t-shirt to University. Though I got no reaction to the t-shirt, the reason I chose to wear the t-shirt is because the attitude of the general public of being amazed at Autistics going to University is not going to change unless they start realising that more Autistic individuals are University students then they realise ….. and hopefully from here we can work on the workplace.

[oneautisticperson]

Autistics Speaking Day: On Communication…

On the 1st of November 2010 the first Autistics Speaking Day was held. This event was in response to Communication Shutdown Day which was held on the same day. Communication Shutdown Day got people to pay a small sum of money and switch off their Facebook and Twitter accounts for that day in order to spread awareness of Autism Spectrum Disorders and to show people what it is like having autism. Here is a link to the Communication Shutdown promotional video: http://www.youtube.com/watch?v=pe6i4AEdsRs

  Autistics Speaking Day was set up by Autistic people who were unhappy with the claims of Communication Shutdown Day. The organisers of this event pointed out that people shutting down their Facebook and Twitter accounts for one day was not going to show people what it is like being Autistic and that all Communication Shutdown Day was going to do was spread misinformation about Autism Spectrum Disorders. So Autistics Speaking Day was set up. To be involved in Autistics Speaking Day, Autistic people (and allies) wrote Twitter messages, Facebook notes and blog posts on others sites about their life experiences, feelings and others matters that relate to being Autistic.

  Today, the 1st of November 2012, Autistics Speaking Day is still going while communication shutdown day is not. In other years I have wanted to participate in this event but I have not even managed to think of a topic to write about. Today though, I am determined to participate and I thought I would discuss the topic of why it is important that Autistic people (and our allies) speak up, not just on this day but in general.

  I sometimes give guest talks at TAFE (sort of like a college) in an autism topic, giving TAFE students an idea of what it is like being autistic, not just in terms of psychology but also in terms of how society views autism and Autistic people. I usually start these talks by saying something along the lines of “well, it is good to see you all made it to TAFE despite being neurotypical” (a neurotypical is someone who is not Autistic). Why do I say this to students? I certainly do not say it to be mean, in fact, most students usually laugh at this comment. I say this to try and make the TAFE students understand that the language people use when discussing autism and Autistic people is important.

  I have often told people in my University classes that I am Autistic. Sometimes the comments I get in response are insulting. Such comments are usually along the lines of ‘well it is great you made it to University despite being Autistic’ or ‘so does that mean you are marked to a lower standard then the rest of us because you have autism spectrum disorder’. The latter example used here implies that since I am Autistic, I must not be capable of producing the same standard of University work as my neurotypical peers. The former example suggests that Autism Spectrum Disorder, by itself, can only be thought of as a handicap that needs to be defeated in order so the Autistic individual can achieve anything. In this example the person who said it actually thought they were giving me a compliment, that I somehow beat autism to attend University.

  Examples of offensive language by neurotypicals towards Autistic individuals are not just limited to University. Earlier this week I was at a meeting at my local Autism organisation with parents and Autistic individuals. During the meeting one of the parents said something similar to ‘…and you do not know what is wrong with them until you receive a diagnosis of autism spectrum disorder’. This suggests that there is something wrong with us Autistic individuals, that we are not as good or valued as the neurotypicals. Another example I have come across occurred last week while I was giving a guest talk at TAFE. One of the students appeared late, missing the part of my speech where I talked about offensive language. At the end of my speech the late student mentioned how impressed she was at my speech given that I am Autistic.

  So why I am bringing these examples up? I am certainly not bringing these examples just to show how much some neurotypical people offend us Autistic individuals (after all, often these neurotypicals offend us without meaning to). Rather I am bringing these examples up to show why it is important that us Autistic individuals be given the chance to communicate, to make it clear that these people are often being insulting even if they are not aware of it. We need to be given the chance to put our point of view forward – and more than that, we need to take advantage of the opportunities given to us to make a difference. I start my talks at TAFE with language use and yet, at these times I have been offended on the spot …. I have stayed silent. How will the language use ever change if people like me do not speak up immediately when we are confronted with insulting comments?

  My contribution to Autistics Speaking Day is not just reflecting on what has happened in the past, but acknowledging that I should be doing more to bring about change and not just let people say these comments – after all how are people meant to change their offensive comments if they have not realised they have offended anyone? Next time I will not just stay silent, next time I will communicate my thoughts!