Sunday, September 23, 2007

Low Functioning Autism

Anyone who has read this site from time to time knows that I am not a fan of the so called Neurodiversity movement. In its essence it is irrational. Neurodiversity (ND) is a group of people who embrace the term "autism" to describe themselves (autistic, autist, autie etc.) a term given to a neurological or neuropsychiatric disorder, but who claim, despite embracing the name of that disorder, that it is not in fact a disorder or disability. They also object to the use of terms like "low functioning" and "high functioning" autism.

Well the truth is that there ARE low functioning autistic persons. Typically they exhibit little or no communication ability or understanding of language. They also may not understand many of the complexities and dangers posed by every day life. My son Conor is low functioning and I am not ashamed to say so. He is a great joy in my life. When I come home from a tough day at work and see Conor's face pressed against the window, waiting for Dad, my spirits soar. I get a "happy buzz" when Conor walks into a room. But he is low functioning. He will never drive an automobile or live independently. He can not be left unattended by adults. And he cannot negotiate crossing a busy street by himself. I am not ashamed of him because he is low functioning. I love him deeply. I enjoy his company. He makes me stronger. But the reality remains that he is low functioning. It would be both foolish and dangerous to his well being to pretend otherwise.

Recently reported stories, some of them very sad, describe the realities of life for some low functioning autistic persons. In a tragic case the body of a 40 year old autistic man with diabetes was found in East Troy Wisconsin after he fell through the floor of a barn. This autistic man did not speak and had wandered off in the past but had been found in unlocked cars.

In the Chicago area a 12 year old autistic boy who never learned to speak had no way to explain to his parents what had caused the horrible bruises on his shins. It turns out that a teacher had forced him to jump for 40 minutes on a trampoline even as he screamed and tried to get down and eventually fell bruising himself on the metal rims of the trampoline. A teachers' aide witnessed the incident and reported it. The teacher has been charged.

In New York a middle aged autistic woman who can not speak was assaulted on several occasions by staff of the facility. Some have been arrested and charged.

In a story with a happier ending a 7 year old boy autistic boy who never learned to speak and who has not been attending school was finally placed by New York city officials in a private school which specializes in teaching children with neurological disorders. The placement was found after the boys story was publicized on the New York Daily News.

Sometimes as in the last incident problems end well. Sometimes autistic children who wonder off and get lost are found safe. But the underlying reality is that there are in fact low functioning autistic persons who can not communicate and display very limited understanding of the world. These recent stories present different aspects of their realities. They are not the realities of some very high functioning autistic persons who claim to speak on their behalf. It is parents, family members and ultimately public officials who actually care for and provide for lower functioning autistic persons. The Neurodiversity movement can help them by not appearing before courts, legislative bodies and the court of public opinion arguing that autism is not a disorder and should not be cured or treated. Such statements do not help lower functioning autistic persons and ... they simply are not true.

6 comments:

Mark said...

Hi.

It seems like it is difficult to get a def. of "low functioning autism". It seems like some only label persons who cannot speak as such, others go by IQ. I have heard that some start as low functioning, but then improve with age (actually, it probably has more to do with love and education than chronological age).

Conor is blessed to have a Dad like you.

Anonymous said...

i thought you said he was low functioning. my gf has a low functioning autistic son. he cant speak. he cant look at you. he gets mad for no apparent reason and will headbutt the walls and has even given teachers at different specialty schools broken noses and concussions. fantastic job youre doing with your son but i wouldnt go so far to say that he is "low functioning". i watched the videos. i dont see how he is low functioning. maybe medium but not low.

trainspotter said...

Good post. As the parent of a "low functioning" autistic child and also having a brother at the "high functioning" end of the spectrum, I am strongly aware of the extreme differences across the spectrum. You are correct that (regardless of where a person falls on the spectrum) that it is still a disability and one which affects many areas of learning, perception and functioning. Unfortunately, the "spectrum" aspect of the disorder still seems to get overlooked causing a number of misconceptions and challenges for everyone,low functioning or high functioning(especially when it comes to providing appropriate services/treatment and utilizing the most effective learning/behavior strategies). Having said that, when it comes to the low functioning individuals (as you illustrated via reported stories...and we all know dozens of them) misconceptions and underestimating the seriousness of these learning deficits can lead to horrible tragedy...a VERY real fear for some of us parents!
Now if it's ok, I am burning to comment on the comment from "anonymous". What makes you qualified to judge from a small video clip a persons level of functioning? Do you KNOW all the areas of this child's life that are affected? My child is low functioning and she speaks...it is all echolalic, her words are as useful for functional conversation as her barking and monkey noises. As far as head butting walls and breaking noses...some do this, some are self injurious, violent to others, scream constantly, giggle constantly, stim etc. there are all kinds of behaviors and many of these change as the child/their environment/demands put on them do. Despite what sounds worse on paper it is all "non functional" and it's ignorant for others to make a trash-can diagnosis of how severe/functioning someone's autism is based on a single case observation! How much external assistance they require on a ongoing basis reflects functioning.
The bright side to autism is that the level of functioning can continue to progress (with help) though out the course of an individuals life as opposed to someone who is mentally retarded (which is a seperate diagnosis from autism)in which case progress stops at a definite point.
Clearly, one sided awareness can be more harmful than good (this is why teachers want kids to read more than one book when doing a book report)and the more info we can get out there the better. I want to thank you for your continuous efforts to give a voice to the ones like your son and my daughter who cannot speak for themselves.

Anonymous said...

AMEN!!! Finally someone who speaks the truth about the lower end of the spectrum. It seems that autism is being redefined as aspergers. There is now an aspergers doctor on that show Grays Anatomy. All autistics are not just a little bit odd. I applaud you for speaking out.

claudio hunter - watts said...

Hello,
I'm Claudio, coordinator of a special education facility for students with autism in Argentina and I was wandering to congratulate you because your thoughts and dedication to your son.
Regards
Claudio Hunter - Watts
www.porres.edu.ar

dazzle said...

omg..... i been looking and looking for some one...somewhere to talk about low functioning autism... i live in the uk and it seems everyone else is on the high functioning side of things........... i DO NOT want my boy to change....i just want other people to be were we are.... RHys is 6 he still in nappies.... he cant hold a convosation and is oblivious to reality as we see it...........he bites.....he smashes things up....but he is so funny and so affectionate....confused.com.... my fear is Rhys as a teenager.....how big will he be... will i be able to restrain him then? future is 100% more scarey than any asd diagnosis........