Worrying About A Child With Autism's Future: Special Needs Living

Suzanne Murray
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children jumpingToday's guest blogger is Katie Olson (aurorabunny), mom to 3-year old Brody, who has autism.

This week, I'd like to share my friend Jackie's (jsbenkert) journal post, which so eloquently conveys the hopes and fears that parents of children with autism (like myself) often have about their child's future. Jackie, thank you for letting me share your story.

Yesterday, I took my daughters to the zoo. It was a consolation prize, of sorts, as spring break is coming to an end, and we started my older daughter's allergy shots during the break. She had another round of shots yesterday, and I thought a trip to the zoo would be a good way to take her dramatic-leaning mind off the searing pain and indignity.

We were eating lunch and I was thinking about asking my older daughter to keep an eye on my younger one (who has autism) so that I could use the zoo's restroom, when I heard some motion behind me -- and then a male voice talking about doves making a nest in the shrubs. I was surprised and momentarily alarmed.

I took stock of where my girls were, and sized up this stranger to determine if he was any threat to us -- the area was fairly secluded, and he came from a part of the zoo that isn't really open to visitors.

It didn't take long, however, for me to realize something about this man, as he went into enthusiastic detail about different varieties of doves, that he eventually volunteered about himself. He has autism, or "ospbergers," as he put it (meaning "Asperger's Syndrome"). He told me his name was Andrew, that he was 34, and married. He said he loves to study doves, and he went into detail about the two varieties that could be seen in our area -- I believe they were a common grey dove and a ring-necked dove (although, to be honest, I was more interested in him than the doves). 

I told him that Lillian, who was sitting next to me, was also diagnosed with autism. He asked me which kind, explaining that there are different degrees. Then before I could answer, he said it didn't matter -- that people think that those with autism are stupid, but he knows they are not.

This was heart-wrenching. Lillian is six years old, and I've often worried about her future -- everything from bullying by classmates to what her life will be like as an adult. Andrew told me that he was picked on from a young age, and said that people could be very cruel to those on the spectrum. He even mentioned how unkind people were to those with Down's Syndrome. He was acutely aware of how people treat others -- something that is not usually credited to people with Autism Spectrum Disorder (ASD). The uninformed tend to think that those on the spectrum are devoid of human emotion and oblivious to unkind words or treatment.

It made me think. A few years ago, before I knew about autism, and before my daughter was diagnosed, how would I have reacted to a strange man coming up to me and starting a conversation about doves? I'm sure I would have been polite, but would have looked for any excuse to get out of there as soon as possible. I'm not proud to admit that. Now, of course, I recognize that he needed to be accepted, and wanted to share his wealth of knowledge with someone who would listen kindly.

I thought about how I want people to treat Lillian. Perhaps I'm "paying it forward," trying to ensure a certain amount of acceptance for my little daughter as she outgrows her "cuteness factor."  I know there will come a time when people will be less forgiving of her odd behaviors as she starts to look less like a cherubic angel and more like a grown-up.

I also know, though, that Andrew has a right to be treated as a human. He is painfully aware that he is different. As he was telling me of the abuse he encountered growing up -- from kids his own age who picked on him for being different -- I felt a heavy weight on my heart.  He told me that he had many times considered suicide. While I would never pick on anyone, I probably wouldn't have gone out of my way to defend, or have been brave enough to try to forge a friendship with someone like Andrew, simply because I was ignorant and fearful of people who were different. A lot of people are still like I was -- fearful and ignorant. I don't mean that as an insult, but merely that we are not taught to understand and accept those who face challenges like autism, Down's Syndrome, CP, or other disorders or disabilities. Talking with Andrew really highlighted the pain we cause by our own ignorance. We can't treat other people like that. It's just wrong.

Meeting Andrew left me with a mixed bag of emotions that will stay with me for a long time.  He is a grown man who has suffered the stigma of being different. He says he forgives those who were cruel to him, but he wishes that people wouldn't be so mean. He is proud that he lives independently and proud that he has a wife. He lives off of SSI (which is below poverty-level), but would lose it if he were to find a job. He supplements his meager SSI benefits by working odd jobs that pay him "under the table," wanting to provide adequate support for his wife. He doesn't drive, and relies on public transportation. He spends most of his free time studying doves. He has a positive outlook, though, and seems to enjoy his life, which is as much as I could hope for either of my girls.

As we finished our lunch, and were ready to tour the zoo, I told Andrew that I enjoyed talking with him. I gave him information about my autism support group and invited him to come and talk with us. Those of us with young children on the autism spectrum often have a hard time imagining our children as adults, and wonder what their futures hold. While I can't say that Andrew is proof that our children will live independent lives, I can say it's proof that it's a possibility. As with all children, kids on the spectrum are unique. We can't extrapolate the experiences of one to fit the futures of all.

Meeting Andrew, though, has given me much to think about -- not the least of which is his capacity to forgive those who have hurt him with cruelty, and his capacity to find ways to make his life worth living. I think he has an inherent wisdom that we "neurotypical" ones often seem to lack. 

So, Andrew, I knew this, and you know this, but in honor of you, I'll share some of your wisdom: Autism does not equal stupid. Autism does not mean incapable of feeling. Autism does give a unique perspective of the world. It does mean that those with autism are as worthy of respect and kindness as anyone else. And it can mean a wisdom and knowledge that many of us could only hope to have. I'm glad I met you, Andrew. Had I been too fearful to talk with you, I would have missed out on the lessons you have to teach. Thank you.

 

 

Image via Zurijeta/shutterstock

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