Saturday, December 4, 2010

Community

The word community can mean many things. It can be the neighborhood in which you live. It can be the school that you attend. It can be a group of people in which you share a commonality.

Like it or not, having a child with autism automatically makes you a member of the "Autism Community". Like any community, it's members are individuals with their own way of interpreting the world. But unlike many other communities, the way those individuals interpret their world varies widely depending on the abilities of the individual.

Autism is considered a spectrum disorder which is why you'll hear it referred to as Autism Spectrum Disorder or ASD. It's a wide spectrum, and the individual's place on it is determined by the person's level of functioning. Generally, those that are non-verbal and severely impacted with co-concurring conditions are labeled as low-functioning, and those that are verbal with an average or above-average intelligence are labeled as high-functioning. Classic autism falls on the low-functioning end of the spectrum. Asperger’s Syndrome and PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified, are labeled as high-functioning. Jacob is high-functioning because he's of above-average intelligence, he's verbal, and he attends a public high school. Temple Grandin, who is one of the most famous people with autism and has gone on to accomplish amazing things in her life, is of course high-functioning. But when she was diagnosed at age 4, when she was non-verbal and highly impacted by her disability, she would have been considered low-functioning.

Because of this diversity, many times it is difficult to find unity within the autism community. Parents of a young child that is non-verbal, unable to communicate, and severely impacted with co-concurring conditions navigate a completely different world than I experienced with Jacob. With the help of a one-on-one aide, also referred to as a behavioral consultant, behavioral therapist, or paraprofessional, Jacob was able to handle a typical preschool and public elementary school. Without the aide, his behaviors would have been too disruptive for the classroom. I was extremely lucky that our public elementary school understood Jacob's needs and offered a lot of support. I was also very lucky to have some skilled and caring aides that worked hard to help him. There are not enough words in the universe to thank all the people that supported Jacob during his early educational years.

In regards to the terms "high-functioning" and "low functioning", I think that these labels give no clue of how capable the person is or any indication of the person's strengths. Especially when saying someone is "high functioning", it gives an impression that the person will do just fine. There are many stories famous people with autism that succeeded in life, so it’s understandable to think that anyone that is high functioning can do the same. But this isn’t true. Just ask any parent of a high-functioning child just how fine their child is. If you give them an opportunity, they’ll share many reasons why they are worried about their child’s future and how exhausted they feel at the end of the day. How their young son resists any type of change and has a complete meltdown whenever he is frustrated. How their adolescent daughter has no friends and feels alone and depressed. How their adult child can't keep a job or live independently. Many of them will tell you that due to the daily challenges faced by their child, it's a struggle to get through the day.

The autism community is also extremely divided on a number of issues. And like a person with autism who has very black and white thinking and cannot take into account another person's perspective, the beliefs of some people are not open for debate. The discussion about vaccinations causing autism divides many people. For me, this topic within the autism community is like religion or politics which we know are subjects that you don't discuss in polite company. I haven't focused a lot of attention on this matter one way or the other. I always felt that my time was better spent focusing on what Jacob needed and then researching on where to find it.

Appropriate therapies and treatments are another source of debate. Most people within the entire autism community agree that the most appropriate way to support a person with autism are with therapies and services that are specific to the needs of the individual. This can include everything from occupational and speech therapy, special diets, and behavioral interventions. What works for one person with autism may not work for someone else. But here again, there can be disagreements on what is the best. For me, I went with my instincts and did what I thought was right at the time.

There is also the debate about curing autism verses the neuro-diversity movement. For those that think autism is a disease, autism needs to be healed or cured so the person can recover. There are a lot of people that are in the business of curing autism, and most of these services are very expensive. More times than not, these services and treatments are not covered by insurance so families spend a lot of money hoping that their child will get better. I can completely understand how a parent of a child that can't communicate, has extreme health issues, and is highly impacted by their disability would want to cure their child. As a parent of a child with a disability, I know the feeling of wanting to do whatever it takes. The other side of this debate involves the neuro-diversity movement where it is believed that the differences of each person should be recognized and respected, that people with autism should be accepted for who they are and not be judged by how different they might be, and that autism is a neurological disorder so taking away the person's autistic traits would remove a key part of the person’s personality. Many adults with Asperger’s Syndrome are extremely proud of who they are, and they wear their Aspie badge with pride.

No matter what the debate, be it vaccinations, treatment options, or neuro-diversity versus a cure, I think we are all entitled to our opinion and deserve respect no matter if it is in agreement with out point of view or not. Unfortunately, I find the attitude is usually "you're either with me or against me" regarding any differing opinions. I’m more of a mind to say let’s just agree to disagree, but sadly, many times my words would be very soundly rejected.

As a parent of a teenager who has been dealing with autism for over 13 years, I have a point of reference particular to my own situation. I’ve done a lot of reading, I’m met many people, and I’ve traveled my own journey. I know more than some people and not as much as others. I have my own opinions. But the one topic within the autism community on which I am an absolute expert and am 100% correct is Jacob. Every parent within autism community can say the same in regards to their child as well.

I don’t think that absolute agreement on every topic within the autism community will ever achieved, nor do I think it is necessary. But I do hope it will one day become a place of acceptance without judgement. A place where all viewpoints will be welcomed and not argued and where differences will be embraced and not discouraged. A place where I can say this is what I believe without a fear of being called wrong, stupid, or ignorant.

As the song goes, What's So Funny About Peace Love & Understanding. I think every community on earth needs more of these qualities, and the autism community is no exception.


3 comments:

  1. Susan,
    this blog has so many thoughts and feelings that I have, and puts them into words. I just can't seem to get them out in such an eloquent way. Thank you for writing this blog :)

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  2. Reading you loud and clear from Essex,England. Very well thought out argument. I like your idea of community. Makes an awful lot of sense. You are doing a good job and I thank you for it.

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