Autism Awareness Day

[Zaarin]

Today is international Autism Awareness Day. So as your friendly neighborhood Aspie, I thought I'd take this opportunity to implore you not to support Autism Speaks, which is a reprehensible organization. The tl;dr version: they do not have anyone who is autistic in the higher ranks of their organization, they treat autism as a disease to be cured without consulting how actual people on the spectrum feel about it, and they've done a great deal to dehumanize people with autism and to violate their basic legal and human rights.

 

[Sunfire]

That sounds... *shudders* Only way I'll support them is to carry them to the trash. It's sad to see such organizations still around, I thought we'd gotten enlightened on that score.

 

[Zaarin]

That sounds... *shudders* Only way I'll support them is to carry them to the trash. It's sad to see such organizations still around, I thought we'd gotten enlightened on that score.

They still get a lot of celebrity endorsements, which I sincerely hope are out of ignorance.

 

[Pendraia]

Hey Zaarin, I haven't come across that organisation before but I'm in Australia we do have very good organisations that provide support to many of the families in Victoria and they do a great job.

Amaze

My son's chronic fatigue specialist when he was a teenager also worked with Aspberger's patients and suggested to us that he was on the spectrum also. We chose initially not to say anything to him as he was 15 and already dealing with chronic fatigue but a few years later we did and we got the doctor to help us to explain it to him. He did a fantastic job and explained how it was a different perspective on life and for high functioning autism like Aspergers that is very true.

I think that both my husband and I are likely to be somewhere on there as well...after working in a school specifically for Autism I can see traits in both of us.

 

[Pendraia]

Was just reading further on that link you provided...I found the bit about going out to coffee interesting. As a teacher working in an Autism specific school we used to take groups out to do shopping every couple of weeks where students bought things from the supermarket and we used to always stop and have morning tea. Students would bring a snack and we would sit in the food court with them and we would buy a cup of coffee or something to eat to have with them. At times it could be challenging especially as most of the kids we worked with had many challenging behaviours but we managed with 3 adults to take 6-8 kids with us.

 

[Zaarin]

It's nice to know you guys have a good organization over there. We have them here, too, but they seem to be eclipsed in the popular media by Autism Speaks.

 

[Pendraia]

There is so much I would like to say here about my own experiences working withing a school for kids on the spectrum but I feel that it would be wrong to do so. I felt for the parents in the video that was from Autism Speaks as I know how difficult some of their lives can be.

I don't think that the video is encompassing of the full range of abilities that make up the spectrum. It was very focused on the lower end of the spectrum and I know from personal experience that often it is not just autism that kids at that end of the spectrum have. It doesn't look at the higher end of the spectrum where many people who have autism are functioning productive members of society.

Autism is often found with other issues like sensory, adhd, ID and for some kids I used to worry about what life would bring them and what was there for them as adults in our society.

The school that I was at went from early years up to older students...what I thought was terrific was they had a partnership with the local TAFE college and students would spend part of their time with the school and part at the TAFE.

The school had Occupational Therapists and Speech Pathologist's full time at the school and they were so helpful in trying to help the students in my care at that time. The curriculum at the school was based on the needs of the child. Behaviour was the first thing to be looked at as if the right strategies were in place for that everything else would fall into place, but we also did a lot of OT and sensory with students as well as teaching more traditional subjects where it was felt it would be worthwhile and functional life skills for those who needed them. It was a shock to the system to go back into a mainstream school.

Even teaching in a mainstream school I have an ASD student this year and at times he finds it very hard to cope with a normal school environment.

 

[Zaarin]

I myself was very fortunate to be homeschooled, which I really think is the best solution for anyone with any kind of special needs and especially for someone on the spectrum, if parents can manage it.

The things that outrage me most about Autism Speaks, though, as someone on the spectrum myself, is first of all the dehumanizing manner in which they portray people on the spectrum, second their complete exclusion of people on the spectrum making their name grimly ironic, and their presumption in focusing all their efforts on a "cure"--a cure which the overwhelming majority of people on the spectrum will flatly tell you they do not want. Aspergers is an intrinsic part of who I am; if I were "cured" I would no longer be me. I also have difficulty viewing autism as a disorder so much as a different way of being; true, there I things I can't do or have difficulty doing, but we all have our own challenges in life. As Ursula K. Le Guin says in The Left Hand of Darkness, "Would you cure a singer of his voice?" Think of all the people who were probably on the spectrum who have made invaluable contributions to the world: Albert Einstein, Isaac Newton, Mozart, Beethoven...

In America, there are plenty of great organizations that support people on the spectrum and their families that aren't Autism Speaks, like the Autistic Self Advocacy Network.

 

[Pendraia]

I myself was very fortunate to be homeschooled, which I really think is the best solution for anyone with any kind of special needs and especially for someone on the spectrum, if parents can manage it.

Yes and no...I actually homeschooled my son for a year before he had chronic fatigue and I don't have any problem with homeschooling in general.

It is a great way to go and kids who are homeschooled are often much more proactive about their learning.

For some parents though they don't have the skills necessary to home school a child, also having your child going to school gives the parent a much needed break at times. Sorry just realised you did say if they could manage it...and you're right it's very much dependent on the skills and resources the parent has.

I think it's important that the needs of the child and the needs of the parent are both taken into account.

Also, some parents go into denial about their children and don't really recognise or understand what having autism means to that child.

Also for children who are on the spectrum it's important that they learn the pragmatic skills involved in playing and working with other children. Whether it's learning to take turns or learning to allow personal space.

There are many parents who would do a fantastic job with homeschooling though. I just think it is impossible to put one strategy in for all situations...each case is unique and needs to be looked at with that in mind.

Not all people who are on the spectrum have the same issues...I'm glad that homeschooling worked for you Zaarin.

The things that outrage me most about Autism Speaks, though, as someone on the spectrum myself, is first of all the dehumanizing manner in which they portray people on the spectrum, second their complete exclusion of people on the spectrum making their name grimly ironic, and their presumption in focusing all their efforts on a "cure"--a cure which the overwhelming majority of people on the spectrum will flatly tell you they do not want. Aspergers is an intrinsic part of who I am; if I were "cured" I would no longer be me. I also have difficulty viewing autism as a disorder so much as a different way of being; true, there I things I can't do or have difficulty doing, but we all have our own challenges in life. As Ursula K. Le Guin says in The Left Hand of Darkness, "Would you cure a singer of his voice?" Think of all the people who were probably on the spectrum who have made invaluable contributions to the world: Albert Einstein, Isaac Newton, Mozart, Beethoven...

In America, there are plenty of great organizations that support people on the spectrum and their families that aren't Autism Speaks, like the Autistic Self Advocacy Network.

Yes...totally understand those feelings and it would have been a better video if it had a broader range of people on the spectrum in it and also if they had a voice within the video.
I agree totally about the cure...my son wouldn't be the unique and beautiful individual he is if you took a part of him away.

You said I also have difficulty viewing autism as a disorder so much as a different way of being This is very much how the doctor talked to my son about it and I thought he did a fantastic job of explaining things to him.

 

[Willowisp]

I have several aspie friends (and I suspect I may be in the spectrum myself), and 'autism speaks' is something we've discussed many times. They disgust me, and nothing they say will ever represent my friends..

If anyone wants to find real information about autism, I recommend searching youtube for the series 'ask an autist', they are really great, and actually helped at least one of my friends realize what had been troubling him all his life (he was diagnosed in his early 20s), and that he was really going through autistic shutdown and meltdown.

 

[Zaarin]

Also for children who are on the spectrum it's important that they learn the pragmatic skills involved in playing and working with other children. Whether it's learning to take turns or learning to allow personal space.

For most people on the spectrum, you probably don't have to teach them about personal space, but I wish someone would teach more NTs about it. And while we're at it, it would be awfully nice if we could replace handshakes with a polite bow...

Contrary to the stereotypes, I've never had issues with sharing or playing with others. Working with others...I can do it, but I hate every second of it. Specifically in group work, I'm very uncomfortable with my grade being dependent on someone else's work*, so if no one takes charge I will (and I'm actually a pretty decent leader, though again I don't enjoy it). But in all circumstances I'd much rather work by myself. Personally, I really don't see "group work" as a useful method of learning in the first place, but that has less to do with autism than it does with educational philosophy, which is a whole 'nother subject... Among the limitations I mentioned above, I'd have a great deal of difficulty working a "normal" job; I get stressed out when I'm around people too much, or away from home too much. I got through college and often I even enjoyed it, but it was also a really stressful period in my life. If becoming an author doesn't work out, I'm going to look into teaching online school, which I think would be a good fallback option for me.

*There are a number of factors at play here. For one thing, I'm smart and have always gotten good grades. For another thing, I take my grades seriously and work hard to keep good grades; I don't like having my grades in the hands of someone who may not take them as seriously as I do. I've known plenty of students who considered a C a "good" grade. And I just like being responsible for my own actions, for better or worse.

 

[Pendraia]

I mentioned that as it is an issue for the ASD student in my grade but yes many other kids need to learn about it. Which is why it's two prong strategy in my class...teach it to all kids but also teach it via social stories and visuals to the student who is most in need.

Many of the kids I've worked with have needed to be taught to be able to take turns but I would never say all people on the spectrum need this.

My examples were just two that sprang to mind given my experiences with a variety of students who are on the spectrum that I've personally worked with. Don't forget that most of my experience has been in a special ed environment to get into this environment in the first place students either need to have language skill issues or behavioural. So often those are skills they need and doesn't reflect everyone on the spectrums needs.

Kids who were like you were would be too high functioning and wouldn't get in...like my current student. I had to fight hard to get this student additional funding so that he has an aide for 2 hours of the day.

Lol...my daughter doesn't like to be touched she'd be with you 100% on that one. She also doesn't like being around people for long periods of time. She is currently at Uni and gets very frustrated with group work.

Teaching online would be a possiblity but from what I've seen of Distance Ed in Australia( I knew someone who worked in Distance Ed) she still needed to go into work. It would depend on the organisation and how it's set up.

Group work is a necessary skill in today's work force which is why it's part of the educational pedagogy for the 21st Century.
I personally can work in a team but often prefer to work alone.

I'm not claiming to be an expert Zaarin, just giving my opinion that's based on what I've personally experienced.

 

[Willowisp]

Well, no two aspies are the same (or autists in general for that matter), but the ones I know never had any problem sharing with their friends. On the contrary, they tend to be very empathic and have very large hearts, with the result that they take the pain of others too deeply and end up being overwhelmed by it. To counteract this, they try to lock up their emotions, and end up appearing cold and uncaring to people who don't know them, while the reality is quite the opposite. Which is why they often struggle with depression, and it's common for aspies to not be diagnosed until after seeking medical help for this.

But yes, not liking touching I can relate to.. not to mention being looked in the eyes.. absolutely HATE that lol

 

[Pendraia]

Don't forget we're not just talking about Aspies but people who are on the Autism Spectrum and that is a huge range of different needs and issues.

 

[Willowisp]

Yes it is

 

[Zaarin]

Teaching online would be a possiblity but from what I've seen of Distance Ed in Australia( I knew someone who worked in Distance Ed) she still needed to go into work. It would depend on the organisation and how it's set up.

This is one reason I gave up on my original plan of becoming a professor, though I originally intended to be an in-class professor since I personally don't think online literature courses (which require a lot of discussion, which in my experience as a student students are reluctant to do online) are very productive. The state where I live, however, has a full virtual school system run by the public school system that is open to home schoolers, disabled students, and others who can't participate in normal classroom environments, which is what I'm looking into. They're always looking for teachers and quite a few of their teachers are stay-at-home parents.

Well, no two aspies are the same (or autists in general for that matter), but the ones I know never had any problem sharing with their friends. On the contrary, they tend to be very empathic and have very large hearts, with the result that they take the pain of others too deeply and end up being overwhelmed by it. To counteract this, they try to lock up their emotions, and end up appearing cold and uncaring to people who don't know them, while the reality is quite the opposite. Which is why they often struggle with depression, and it's common for aspies to not be diagnosed until after seeking medical help for this.

But yes, not liking touching I can relate to.. not to mention being looked in the eyes.. absolutely HATE that lol

I've learned how to "fake" eye contact by sort of looking at a point between a person's eyes. It passes at medium range, anyway. And I know what you mean. I've more than once been accused of being "pretentious," "arrogant," or "aloof" because I'm not good at verbally expressing my emotions. I absolutely hate the stereotype of Aspies as cold or unfeeling, because in my experience we feel even more deeply than the average populace--we just don't know how to express that to others.

 

[sanbie]

Hey Zaarin, I haven't come across that organisation before but I'm in Australia we do have very good organisations that provide support to many of the families in Victoria and they do a great job.

Amaze

My son's chronic fatigue specialist when he was a teenager also worked with Aspberger's patients and suggested to us that he was on the spectrum also. We chose initially not to say anything to him as he was 15 and already dealing with chronic fatigue but a few years later we did and we got the doctor to help us to explain it to him. He did a fantastic job and explained how it was a different perspective on life and for high functioning autism like Aspergers that is very true.

I think that both my husband and I are likely to be somewhere on there as well...after working in a school specifically for Autism I can see traits in both of us.

I agree Pen in Australia we have wonderful help available for Autistic children...now changed to Autisms...because the spectrum is so varied...My great grandson has high functioning Autism and the school he goes to is wonderful...all the children are in normal classes...but if they have a moment...which they often do...the support teacher takes them out of the class so as not to disturb the other children...

 

[Pendraia]

That's why I fought for the aide Sanbie...mind you I only have them for two hours a day.

 

[sanbie]

Did you know that there is no such thing as aspurgers?(not sure on spelling) any more...it's all now under the one banner of Autisms? Andre was classed as having aspurgers...then that changed to having High functioning Autism...there are 3 children in his class with him and they have there own support teacher which I think is wonderful...

 

[Pendraia]

Yep...under the new diagnosis method it's all aspergers. Still there just renamed it to High functioning Autism. That's why he has a support person all day...if there are 3 in the grade. The funding from 3 for two hours a day would give them full time assistance. I was told that was what would happen this year but it didn't...don't get me started on funding for kids with disabilities...unless they have absolutely terrible behaviour it is really hard to get any support these days.