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5 Things the Autism Experts Said My Son Would Never Do (Slideshow)

5 Things the Autism Experts Said My Son Would Never Do (Slideshow)
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As April is Autism Awareness/Acceptance Month. You may have been hearing quite a lot about the neurodevelopmental disorder. For all the publicity and public awareness campaigns, for all the autism walks and research studies, much about autism remains yet unknown, such as what causes it? Why, despite all that we now know, are so many children who end up with an autism spectrum disorder diagnosis not identified earlier?

When my son Charlie was diagnosed in July of 1999, the world was all unknowns and not only because we didn’t know why Charlie was autistic, what the best way to teach him was, or why he screamed bloody murder when we tried to get him to stop looking at a spot of red paint on a neighborhood play structure.

What experts, psychologists and too many books and websites told us to expect was all “nots” and “nevers”: Charlie would “never” be able to do X, Y and Z (go to college, get married, cross the street by himself). He would “always” need A and B (everything to be the same, one-on-one support in classrooms) and forever be a toddler trapped in a maturing body.

Thirteen years later, with Charlie (who is moderately to severely autistic) a few weeks shy of turning 15 years old and nearing 6 feet tall (still a bit shorter than my husband, Jim), I think I can say that we’ve moved far beyond those “expert” predictions. It is the case that Charlie is not going to college and that romantic relationships are not likely for him, due to the extent of his intellectual disabilities. But he is no two-year-old in a tall and lanky frame, but a teenager in all regards. He doesn’t lead a typical teenager’s life; he attends a county autism center where his curriculum is focused on learning skills of daily living and vocational training. He will not be able to live on his own. He still has “behavior storms” because he can’t otherwise communicate what he feels and thinks.

Charlie has come a very long way from the woebegone toddler he once was, clinging to a stuffed Barney and not responding to any of the attempts of a room of specialists to interact with him. Here are five things “those in the know” told us he would never do that Charlie, with all the odds against him, has achieved.

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Photo of the author and Charlie around the time he was diagnosed with autism

 

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4:12AM PDT on Apr 3, 2013

Thank you for sharing these photos of your son, Kristina, and your story of the challenges you and Charlie have overcome. I was born back in 1961, and not only was autism supposed to be vanishingly rare, but it was considered to be a male-only disorder which always involved mental retardation. So I, as a high-functioning female autist, slipped under the radar until I was in my early 40's. I had to do a lot of things just to "fit in" than I would have done if it had been just left to my inclination, and some of those are still etched in my mind: dentist trips in particular were horrendous!
I'm not surprised that Charlie has conquered his obstacles, because one of the biggest obstacles I've found is the low expectations others have of us once they find out we are autistic. But if we start, as I did, not knowing, then I was not limited by what I could do.
Alison

11:06AM PDT on Aug 16, 2012

each child, no matter WHAT issues they may have, is an individual and will do thing INDIVIDUALLY. one size does NOT fit all. period

8:53AM PDT on May 7, 2012

Ok, let me say this, thank you to the mother who never gave up on her son Charlie. I remember when my mother shared with us after we were older; that she did not know our sister Michelle was autistic until she was three years old. She took her to the Doctor and told him that she's different from the rest of us, she doesn't talk, doesn't play with us, sits off to herself and Mama thought Michelle was just being Michelle until he told her, (your child is autistic), put her away, she will never grow to love you or know who you are and my mother said, "No, I will not give my child away, I will keep her and love her as long as she lives"! Though Michelle has come a long way, I can happily say, Michelle looks forward to going to church every Saturday, she loves Mama and the rest of us, she knows who we are, she can dress and do lots of things for herself & and helps around the house when asked for help. With the help of a speech therapist, she can talk much better than years ago in her younger days. She has a job working three times a week at the center for the handicap. I wish that Doctor that told my mother to put Michelle away can see her now, his eyes would drop out of his head. So, I admire any mother/father, who stands by their child born with disabilities. Michelle is now 53 years old and a beautiful woman with a loyal and humble soul.

8:46AM PDT on May 7, 2012

ok, let me say this, thank you to the mother who never gave up on her son Charlie. I remember when my mother shared with us, that she did not know our sister Michelle was autistic until she was three years old. She took her to the Doctor and told him that she's different from the rest of us, she doesn't talk, doesn't play with us, sits off to herself and Mama thought Michelle was just bein Michelle until he told her, (your child is autistic), put her away, she will never grow to love you or khow who you are and my mother said, "No, I will not give my child away, I will keep her and love her as long as she lives"! Though Michelle has come a long way, I can happily say, Michelle looks forward to going to church every Saturday, she loves Mama and the rest of us, she knows who we are, she can dress and do lot's of things for herself though and helps around the house when asked for help. With the help of a speech therapist, she can talk much better then years ago in her younger days. She has a job working three times a week at the center for the handicap. I wish that Doctor that told my mother to put Michelle away can see her now, his eyes would drop out of his head. So, I admire any mother/father, who stand by their child born with dissabilities. Michelle is now 53 years old and a beautiful women with a loyal and humble soul.

10:05AM PDT on May 4, 2012

I like the barber story a lot. Oftentimes, even with autistic kids you have to treat them like they have good sense, and have expectations that they will behave. They can be very manipulative, but a lot of it is because they are expected to misbehave. So you build in some supports for appropriate behavior. They really want to be treated in an age appropriate fashion and, with some support, will usually behave appropriately. Don't believe the "perpetual toddler" crap. A teenager, even if mentally retarded or autistic is still a teenager and likes teenage things, including looking nice, even if they have the judgment and learning ability of a young child. They have life experiences that a toddler does not have as well as hormones and a craving for acceptance that they cannot express verbally. What they need the most help with is decision making and judgment. I have been a special educator since 1975, mostly with severe, profound, and multiple disabilities and every one of my students always made some kind of progress socially, academically, or behaviorally. You just have to believe in them. CEC has had an awards program for years called YES I CAN. I think that sums it up.

3:50PM PDT on May 3, 2012

When my now 28 year old son was 3 he was nonverbal and we had no idea what his future would be. He is now married, with a typically developing 2 year old, has a good paying job, bought a house at 24, has close friendships and knows my neighbors better than I do. My 26 year old daughter on the spectrum is not quite as fortunate, but is doing well, and plans to move into her own apartment within the next few months. None of us really knows what the future will bring. But my kids are healthy and happy, and that's as much as I could hope for. I never dreamed that their lives would turn out as they have, back when they were little tykes.

10:02AM PDT on May 2, 2012

Amazing story. It just shows that with sheer love and determination more can be achieved than thought possible.
Our son with Asperger is now taking driving lessons something that was way beyond our expectations 23 years ago.

Kudos to you Kristina and to Charlie.

10:34AM PDT on May 1, 2012

Bravo to Charlie! But braves repeatedly to his parents, who, out of sheer love and determination, have listened to their son and helped him achieve all these milestones. It appears that the breakthrough that you made is that Charlie had a fully recognized sense of Self, and desires to communicate, from birth. Many, many parents. of both autistic and non-autistic children, never recognize that, and treat their children as objects to be manipulated, or as animal to be trained and curbed.

I'll bet that there are plenty of achievements that you haven't included: how to get dressed, habits of personal cleanliness, preparing his own lunch, even waiting his turn. I'll bet he has even surprise you by picking up new skills on his own, without even guidance from you! (And, no, moving his mattress into the hallway isn't one on the list.)

4:42AM PDT on May 1, 2012

A dedicated parent plays a huge role . Respect.

4:25AM PDT on May 1, 2012

I know from experience that one cannot afford to listen to negative 'professionals'. So often people say that they were told that they wouldn't do this or that and yet they do. People who have extra challenges in life, and their families, need all of the encouragement that they can get and can't afford to listen to any who would hinder their progress. All the best Charlie, you have come such a long way and should be proud.

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