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Autism: Looking Ahead To The Teenage Years

2013-07-06 10.23.30

A few short weeks from now, my older son George will be turning 10. This is a pretty big milestone for any parent. Not only will it launch George into double digits, it will mean that I have navigated the mysterious world of parenting for a full decade. Not just any old parenting, either – special needs parenting.

In his ten years, George has accomplished some amazing things in the face of his autism. I could go on all day about progress and milestones and potential, and I really am proud of his determination. Whether or not he is aware of his disability is debatable, but either way, he works really hard for every single victory. The smallest accomplishments that would go unnoticed in most families are a giant cause for celebration in ours.

The harsh reality, though, is that George still has some challenges, the most obvious of which is his lack of speech. He can talk – he has the physical ability and the vocabulary – but he doesn’t. His speech is mostly limited to requests, although he does occasionally make mind-blowing (to me) statements, like last week when he showed me his “screaming green angry gorilla”, which was actually a Hulk toy.

We cannot have conversations with George. We cannot say, “So, what did you do at school today?” and expect him to answer. His standard answer to most questions that are posed to him is “yes”, even when that doesn’t fit the question. Of great concern to me, if something bad was happening to him, like bullying or molestation, he wouldn’t  be able to tell me about it.

That’s just the speech side of it. Social communication is an issue big enough for its own blog post. And as much as George has made phenomenal cognitive gains, in many areas he still functions well below the level of typical kids his age.

And so, with his 10th birthday approaching, my husband and I are preparing ourselves for the fact that he may not be as high-functioning a teenager as we have been hoping. When we got his report card a couple of weeks ago – the one that says he is “transferred” to Grade 5, unlike other kids who are “promoted” – I had a moment of pure terror at the realization that 8 years from now, he will be nominally eligible to graduate high school. It wasn’t the normal “Oh, how fast time passes” kind of terror. It was fear for George’s future.

Until now, my husband and I have been swirling these thoughts around in our heads, but today we spoke about them for the first time. We talked about preparations that need to be made and programs that need to be sought out. We talked about what the reality of life is likely to be when George reaches teenagerdom, just three years from now. He will not have a peer support system like most kids, and he will always be quite obviously “different”. He will go through the angst of adolescence without the ability to express himself verbally, and if we don’t keep a close watch on him, he might be the target of bullying. Other teens – or, Lord help us, some adults – might take advantage of his natural sweetness and trusting nature.

Talking about it makes it so much more real and so much scarier. It brings tears close to the surface and makes me feel very emotional. It makes me wonder if I, as George’s mother, have been doing enough for him. Is there something I have overlooked, some possibility that I have not explored, some avenue of opportunity that I have allowed to pass by?

Of course, I could be wrong. We could see George’s speech and social communication skills explode one day. I am not giving up, and I am not losing hope. I am simply being realistic so I can equip myself to provide the kind of support George will need as he navigates his way from here to adulthood.

Today, when I was out for a walk with my family, I kept looking over at George with an aching heart. He is my beautiful boy, with the most tender of souls, and I just want for him to be OK.

(This is an original post by Kirsten Doyle. Photo credit to the author.)

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Autism And Adolescence: Preparing For The Storm

I was educated in the 80’s at a girls-only Catholic school that was run by nuns. The school was high on academic excellence, and a high percentage of its graduates went on to achieve some pretty impressive things. At the same time, though, the school fell flat where it came to life skills training, and many of those people who wound up in noteworthy careers also struggled in various areas of their personal lives.

Throughout high school, I frequently found myself being summonsed to the principal’s office. The principal was a mean old nun named Sister Elizabeth, and she hated me simply because I was not a clone of my cousin, who she had taught at a different school several years previously. Every visit to her office was the same, regardless of what alleged infraction had sent me there. First, Sister Elizabeth would ask me why I couldn’t be like my cousin, and then she would put on a grave face and say, “Whether you throw a teaspoonful of mud or a bucketful of mud, you’re still throwing mud.”

What the hell was that supposed to mean?

I mean, I was the shy, socially awkward kid in my peer group. I wasn’t exactly a trouble-maker, and when I did hit a difficult patch in eleventh grade, my troubles were directed towards myself, and barely caused a ripple beyond my immediate group of peers. I was never caught smoking under the bleachers, I never swore at a teacher, and I never had a pack of condoms fall out of my pocket while running down the hall. Interestingly enough, the person who all of this did happen to was never, to my knowledge, sent to see the dreaded Sister Elizabeth.

What the school laughably called “sex education” happened in the form of a couple of talks given to us by outside counselors when I was somewhere around tenth grade. The talks had the following central theme: if you have sex before marriage, you will undoubtedly go through teen pregnancy and a life of poverty and deprivation, and your child will be a juvenile delinquent addicted to drugs, and when you die you will go to hell.

We were given some very basic information about the different forms of contraception, and then told not to use any of them on the grounds that they were a sin. The only acceptable forms of birth control, we were told, were abstinence and the Rhythm Method (which, of course, was reserved strictly for marriage, because of the whole going-to-hell thing associated with sex).

In retrospect, the timing and the subject matter of these sex education talks was kind of funny. By the time we had to listen to them, most of my peers had been sexually active for at least a year and probably knew more about contraception than the people delivering the talks. To my knowledge, there was only one teen pregnancy in my peer group, and it happened after we had all graduated high school.

Things today are very different. Kids are maturing physically at a younger age than my generation did, and for the most part, society seems to have let go of the notion that teens just shouldn’t have sex. There is an acceptance that they are going to do it anyway, so we may as well equip them with the tools and knowledge to do it safely. I am all for that, although I certainly wouldn’t want my boys to be experimenting with sex until they have reached  a certain level of emotional maturity.

The question that is plaguing me is this: how do I deal with this topic where my son with autism is concerned? He may only be turning eight in September, but time flies, and before we know it he will be entering the world of pre-adolescence. His physical maturation will far outpace his social development, and I worry about the time when he will have physical drives that he will not be emotionally equipped to deal with.

And so I have decided to start seeking out resources and advice on this topic now.

That way, when the storm of adolescence hits, I may have a fighting chance of helping my son navigate his way through it all.

(Photo credit: http://www.flickr.com/photos/alamosbasement/3661120171)