Monday, March 19, 2012

I Wonder What People Know About Autism

A few weeks ago, I was sitting here thinking “I sit here and talk about how I want to educate people about autism, but I wonder, what do they already think about it?” So rather than sit and think some more, I took action, put together a short list of four questions and posed them to my friends and family (and some random “tweeps”) on Twitter and Facebook. This blog post compiles their responses to those questions and my responses and comments to some questions/answers that were gathered. I’d like to first thank everyone who participated (over 20 people) and gave permission for me to use their comments.

My first question was:
“1. Do you know someone who is autistic? a. If so, what is the age of that person?”

I was pleased to see that the majority of the answers to this question was that yes, most people knew someone who was autistic (82%). Even more surprising was the number of adult autistic people that people were familiar with (8). The diagnosis of autism prior to the last ten years was not as common as it has become lately, so this was rather surprising for me to see. The average age of those known were teenagers, with the youngest being 4 and the oldest being in the late 40's.

The second question asked was:
“2. What percentage of children today do you think are diagnosed with autism? (no looking it up!)”

Out of 22 respondents, 6 people got this answer correct (or close enough to correct that I gave them credit), which is just less than 1%, or 1 in 110 children. The surprising part of this question for me was that of all those surveyed, 50% of the answers thought that more than 10% of all children born today were diagnosed with autism.

While the first two questions were more about facts, the last two are more about interpretation and personal experience. This is where I really asked people to be honest and I got what I asked for (and appreciated it more than you know).

The third question I asked was:
“In your own words, what does “autism” mean to you?”

The response I liked the best was “Someone who is highly intelligent but sometimes 'in their own world,' making it hard for them to concentrate, interact with others, and be considered socially 'normal' (air quotes intended)”.

Some people put their own personal spin on the question (which is just what I asked for):

“To me autism means someone who sees the world a little differently, someone who notices the details that other people look past and someone who likes things to be a certain way. Someone who may be a little awkward with other people but someone who rewards you by giving back 10 times more love and friendship when you make that little extra effort to get to know them.”

“To me autism means different behaviors for each individual. it does mean that each individual is not functional, it just means that they have a different learning style. Some are more vocal than others, while some have repetitive behavior. It also means preparation to me. It is quite common that a child with autism is unable to be gainfully employed, to have a relationship, and may need some assistance in monitoring their funds for future use, with access to state assisted programs.”

“Autism means to me a person that just has a missing link. Most of the children I have known in the past are highly intelligent. They just have a hard time socially.”

One friend was honest in the fact that they weren’t always sure that they knew that “normal” children were like: “Honestly, I don't know how to articulate it. As someone who's never been a fan of small, colorful children, I find that I'm oddly more comfortable with autistic kids even though I have no idea what I'm getting myself into most times. Or rather, what's going to come my way at any given time. But maybe that's just me getting older and more laid back with kids.”

Some more clinical definitions: “Autism is a socio-developmental disorder characterized by an inability or difficulty in effective, meaningful communication with others, coupled with repetitive behavior patterns.”

“Autism is a disorder that primarily affects communication and interaction, may also be accompanied by speech delay and/or other developmental delays and by sensory sensitivities, and which affects the ability to function to varying extents and degrees.“

“The person's brain is wired in such a way so that they do not interact with society in the way the majority people would.”

“Autism is a disorder which affects the learning and development of someone. Someone can be autistic but be high functioning but it could also really affect them.”

One person explains about the differences in the spectrum: “I know “autism” is broad and covers a whole spectrum. There’s “high-functioning”, which are the folks who can speak and learn new tasks differently from the rest of us. But when I hear “autism”, I generally think of those who are ritualistic and fixated on certain objects or subject areas and have a very strict method for doing things. For example, the 6-year-old I mentioned earlier has a very specific way of putting his toys away. It consists of a pile and there’s a method to how the toys get stacked in that pile. It can be very time consuming for him and his mother, but it’s part of his nightly ritual.”

Simply put: “To me it signifies problems with communication and relating emotionally.”

Some positive perspectives were also given:

“Autism means a person who has some learning difficulties and social interactions may be difficult for them, I view autism as an additional obstacle but not necessarily one that can not be over come.”

“Children who react to over-stimulation by withdrawing within themselves but who may have a special skill set that takes some time to show.”

“I don't look at something is wrong with them. I just look at as they see the world differently.”

“I've never thought about that. I was raised to believe that everyone is the same but some of us 'learn' at a different pace.”

One respondent noted that “It is a very disturbing trend that seems to be growing larger.”

An interesting observation was made by one person in that: “"Autism" means to me someone that is quiet, and has problems communicating with others. A person who prefers to do activities by themselves rather than in groups. This can be both Adult and children. I do not think "Autism" has age limits.”

The last question I asked was a selfish one:
“4. Give an example of something you could do to help out a parent of an autistic child.”

I asked this question because as a parent of an autistic child, sometimes there is nothing more I would love than for someone to acknowledge that my son DOES face obstacles. And you know what? It’s damn exhausting as a parent. Any parent of a special needs child, no matter what that child has, will tell you that. I know that I’m lucky because my son is highly functioning and is relatively a good kid, but catch me on a day when he’s having a rough time and you probably wouldn’t recognize me. A bad day for him equals a horrendous day for me. So I asked this question to educate the masses.

Take the time to read the answers. The next time you have a free night and can spare it, take one of these ideas and put it into motion for someone you know. Trust me, the person who’s life you touch will thank you a million times for that little thought of kindness.

“For some parents I babysit and hang out with the child. For those I am not close with I can assist in obtaining state benefits, especially title XIX for older children, and Special needs Trusts for younger children so they are capable of living a full long life taking some of the stress from the parent.”

“Not look at that parent and just think they don't know how to discipline their child. Every child deserves to be at a restaurant, church, carnival. Some children have a hard time with these situations, but we can smile at the parent and be proud of them that they expose their child to all the wonders that they deserve!!”

“I have invited parents of autistic kids to speak to my police officers to help them understand how to handle calls with them better. This also gives the parents a better understanding on how we operate.”

“I would try to help by learning more about that parent's routine and redirection methods, and engaging both the parent and child regardless of the behavioral context or situation.”

“Listen and offer support. Know it isn't always easy and that they may be focused on other things.”

“Depending on the situation:
me as a non parent: treat the child as a human for a start - not as a moving doll, have more patience with them
me as a parent with a child the same age: encourage my child to play with him, to have more patience with him and to see past any disability.”

“Give them a hug. Offer to help (every parent needs a night off!) Get involved. Learn more about autism.”

“Well, beyond being willing to listen and donating to autism research/charities, I think the most helpful thing one can do is educate themselves. You can't treat any condition without first understanding what it is. While I do think offers to help baby sit and the like are noble, unless one has experience working with autistic children, I feel this could go awry.”

“I think the best you can do for the parent of an autistic child to treat them the same as any other parent, every child has ups and downs, tantrums and their own idiosyncrasies. Being there and listening when they need it just as you would with any friend and making sure that they feel loved and supported when ignorant people judge them.”

“Be there to support the friend, or help when they need something. I have found that people with children, with or with out disabilities or diseases, really just need support and someone willing to help them every now and then.”

“Give them time in their own home so child is comfortable in routine and spell the parents to allow them to get things done.”

“Be understanding. Watch the child once a week so. They can go out and enjoy something.”

“Spend time with the child so that the parent can have some respite. Spend time with the child and the parent, and include them in a fun activity. Make them feel as "normal" as possible.”

“Allow my child to be their child's friend and encourage such friendship.”

“From reading your past blog post I learned it's better to ask questions regarding autism then to assume something.” (THANK YOU!)

“Treat them the same as a parent of any other child (inclusion-wise); ask questions (out of children's earshot) to help gain a better understanding.”

“Listen to them.”

“Learn the different aspects of autism. All autistic children aren't the same. This is something that I never knew. Not every person with autism is Rain Man.”

“I think the most important thing would be support and the willingness to learn more about the effects of autism on both the child and the parent(s).”

“First, better educate myself on "Autism." Then making sure others around that family understands about it also. Next, I would offer support to the parents and family involved. Making sure that they know they are not alone, and there is help for them.”

Thank you for reading this. It means a lot to me. And to Lex. And thank you again to everyone who contributed to the content