Friday, August 21, 2009

Invisible Autistics and Severe Autism Awareness at Interaction in Mind

Severe autism awareness is the focus of a new photography oriented autism site called Interaction in Mind.

I have written often about the lack of attention paid to those on the severe end of the autism spectrum, the invisible autistic persons whose autism challenges do not permit them to create orchestrated videos about stimming as a language or to appear before courts and political forums seeking to prevent autistic children from receiving ABA treatment. Unbeknown to the mainstream media (with the exception of the Vancouver Sun as shown in its excellent series Faces of Autism) there are severely autistic children and adults who can not communicate with or without any assisted technology device. There really are autistic adults living in institutional residential care for the rest of their lives. I have visited institutional facilities and seen autistic adults in care. The mainstream media, by and large, has not.

Even in research the focus is almost entirely on High Functioning Autism. Some prominent "autism experts" like Dr. Laurent Mottron routinely publish 2-3 papers a year on autism studies ... involving High Functioning Autism participants. Far fewer papers are published which focus on studies of persons who are more severely affected by autism, persons with Low Functioning Autism.

Blog sites are little better and often times worse. Almost daily the Autism Hub bloggers, persons with High Functioning Autism or Aspergers, family members and even professionals exhort parents and bloggers to speak "Posautively", or positively, about autism spectrum disorders. One enterprising autism parent blogger even organized a Twitter day dedicated to tweeting about the positive aspects of autism. Another well known Canadian blogger likes to gush about the joy of autism while criticizing parents of severely autistic children who seek to treat or cure their autistic children. What all of these efforts do is seek to whitewash the realities of autism. What they do is create a sub-class of invisible autistics whose autism challenges can not be mentioned honestly without being accused of creating negative stereotypes of autism.

There are signs though that a more realistic, less ideological approach to discussing autism disorders is beginning to develop. Jonathan Mitchell, autism's gadfly, Jake Crosby at Age of Autism and Stephanie Lynn Keil are all persons with autism spectrum disorders who refuse to glorify autism disorders, who try to write honestly about autism and the restrictions it can impose on the lives of those affected.

Interaction in Mind, a photography oriented web site created with the express aim of raising awareness about severe autism, is a promising new development. I am not sure how the site creator will raise severe autism awareness with a photography oriented site. As a father of a severely autistic son I post many pictures of my son at his best, enjoying life. I have posted some pictures of my son's hands showing self inflicted bite marks or pictures of broken windows. But for the most part my photographic efforts have presented the joy I find in Conor each day. It is difficult to take pictures at some of the more challenging moments when matters require complete attention or even to post the pictures of some of the results which can remain afterward.

The idea of raising awareness of severe autism at Interaction in Mind is excellent. The challenge for a photography oriented site will be to include some of the negative realities that characterize severe or Low Functioning Autism in a world where people would rather see "feel good" representations of reality instead of harsher truths. It will not be easy but it is a step forward just to see a web site dedicated to raising awareness of severe autism. I wish every success for this very worthwhile and promising project.

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John Best said...

Aren't there laws pertaining to cults by which the leaders of Neurodiversity could be prosecuted?
I think sane people will agree that opposing a cure for a mental illness is insane. Neurodiversity has exerted undue influence on mentally ill people, including many minors, and convinced them to subscribe to the insane premise that they want to be mentally ill and do not want to be cured.

While Neurodiversity does not appear to profit from this, Pharma profits immensely when people don't prove their negligence by curing autism through addressing it is an injury caused by Pharma. People cured of autism are legitimate evidence in court against Pharma. There can be no other reason behind all of this ND insanity and bogus rhetoric.

John Best said...

There are good discussions on cults here and I believe they may be applied to Neurodiversity:

Stephanie said...

I think the point of this (at least one of them) is to get LFAs more in the public eye. It's hard to get them in the media because you know the media doesn't like reality.

I'm working on my own "project" along a similar line (among others).

Roger Kulp said...

These photos are a disappointment.I expected to see pictures like the ones you have posted.You know,self mutilation,and property damage.Fun stuff like that.

I am guessing there are a lot of autistic adults who wish their parents had taken and saved photos like that,when they were children.

I think there are a number of reasons the research is so heavily centered on the higher end of the spectrum.Neurodiversity bias,on the part of the researchers,may or may not be a part of it.Most of the autism research that is done, excludes autistics with "comorbid conditions".What is considered a "comorbid condition" can vary from one researcher and institution to another,but often it can be something common like a diagnosed seizure disorder,or intellectual disability.This practice needs to stop once and for all.

Neurodiversity is able to not only exist,but thrive and be taken seriously,because the official definition of what constitutes autism is so ridiculously limited.I think if you were to do a survey of the 400 or so DAN! doctors,about the various conditions their patients had,and how they directly contributed to their autism,or to the severity of their autism,you would get a very different picture of what autism is,than the one the APA,and IACC promotes.

I am someone who has gone from being severely autistic as a child,to being,for the most part, moderately autistic as an adult.Had I gone into an institution,as was suggested to my mother,when I was a child,I would never have ended up where I am now,seeing an excellent DAN! doctor.I would argue there would be a lot fewer autistic adults in homes and institutions,if they were allowed to use biomedical treatment.

I have had a number of people suggest that I start my own blog, but I don't feel the need or desire to do this right now.I do think there needs to be places on the web where Anti-ND autistics can gather and meet,and for the most part it doesn't exist.

Karen Freeman said...

I got SO tired of mainstream medicine saying all that was available for our son was EIBI and behavior training or medications that they would prescribe without knowing more about his condition. We finally got an MRI done (after fighting for over a year) and had it sent down to Dr. Fernando Miranda of the BrightMinds Institute who believes you cannot help anyone with behavioral issues without first looking at the brain. (Made a lot of sense to us) He prescribed Trileptal for Jacob and told us that a part of the right brain had not grown as much as the rest of his brain. This seemed logical as he stopped growing in utero at 7 months. We tried the med. last year but he had a rash to it. We restarted it in July and have seen him blossom! He is much more aware of things, in touch with other people's feelings, less moody, etc. Dr. Miranda has told us that the brain will self-correct itself in time.

I do not want to say that everyone will get the same diagnosis, but if we had accepted just one view of autism (whether it was the DAN view or the doctors here at the IWK) we would never have been able to see our dreams come true for Jacob. I absolutely believe he would be in a group home.

As parents we have to be investigators, doctors, nurses, anything to help these kids. There is not one answer and unfortunately, we have to be the ones to push for the answers for our special child.

Autismmom said...

Thank you for raising awareness of our children. My son went from high functioning to moderate to severe and recently back to moderate (all between ages 4-7). Our family became invisible, as did he, as we couldn't go anywhere.

I will definitely be following this work. Thanks for making us aware of it. Your son is beautiful.

Roger Kulp said...

Karen Freeman said...
As parents we have to be investigators, doctors, nurses, anything to help these kids. There is not one answer and unfortunately, we have to be the ones to push for the answers for our special child.

Try not having a parent willing to help you,and having to figure it all out yourself,as an autistic adult.All of the biomedical issues that trigger regression,and what you can do to improve them.

Even nowadays,if you have a parent that believes in neurodiversity,or believes autism is a mental illness,the biomedical issues are not going to be addressed any more than they were thirty or forty years ago,when nobody knew they existed.ABA and occupational therapy are great,but they aren't going to address medical problems that continually trigger regression,as they do in a lot of autistics, myself included.

Interaction in Mind said...

Hi - Thanks for the link.

Interesting thoughts on how to portray the challenging side. I have another blog with pictures of broken windows - had we been in the broken window stage at the time (5 in one year! - they have since been strengthened) they would have appeared on the photoblog and on Flickr and probably in the gallery too. Slowly I'm sure photos that represent the challenging side will be added (there's one on Flickr of my son slipping out of my grasp and running - it's a start, when I get time I'll go through my archives and add more - starting with the broken windows....).

I also believe however, that one of the reasons that almost no-one bothers to research kids with severe autism- apart from the fact it's difficult, is because there's a belief that this group doesn't do very much of interest. That's there's not very much going on in there, that they are totally shut off from the rest of us. If life can be shown to be potentially good then perhaps people will spend money in this area. Maybe wishful thinking. Although I have found that people pay more attention to positive images than negative ones. A whole other discussion in there. Draw them in then hit them with the reality perhaps!

Please do feel free to add photos showing the challenging side to the Flickr pool. Or, if you have something you wish added to the gallery please let me know. A picture can often show more than a several pages of text. The YouTube group may be another good way to share challenging (and good!) moments.

I put the website together in about 6 hours to get it started. The direction it goes in depends on those taking part. I'd noticed some big photography communities on the web, and wondered whether there was potentially a large community out there and this might be a way to get us together. But yes it will certainly be more 'real' and make a stronger statement if it shows all sides of severe autism.