Getting a diagnosis is often a life-altering event.
Part one of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.
Autism is a neural-developmental disorder characterized by social and communication impairments and repetitive or restricted interests. The rates of autism are drastically up – some years ago, it was 1 out of 10,000. Just a few years ago, it was 1 out of 500. When I started doing the interviews for these stories the rate was 1 out of 150. Since then, the CDC has released data that it now affects 1 in 110 and possibly 1 out of 100. That’s one percent.
More on autism:
Visit our Autism page.
So who are all of these people? Are these new cases? And why? Or are these children or adults who have never been diagnosed or were diagnosed with other things?
We’ll attempt to answer these questions. Along the way we’ll meet dozens of children and adults with autism – and their parents, teachers, doctors- in the Southwestern Pennsylvania area.
For anyone with autism, the journey officially begins with the diagnosis. But before you get a diagnosis, there are signs that something is amiss.
Parents usually notice the signs in the first two years of life.
Sherri Barnett, Joy McDaniel and Patti McCloud.
Sherri Barnett: My brother watched him one day and a friend of his came over, his son was autistic. He looked at my brother and he said ‘Do you know your nephew is autistic?’ And my brother went, ‘what the heck is that?’
Joy McDaniel: We were a military family and I noticed she was just different than the other children. Pleasant. Oh so pleasant, so sweet, so funny. But she didn’t have the vocabulary or like the, what’d you call, like baby-trash words. We went to the military hospital and went to see the pediatrician and he said, ‘No two children are alike.’
Patti McCloud: We have four grandchildren that were born in the same year in my family, I come from a family of ten so there are a lot of grandchildren. Jordan was born first in March and then there were three others born in the same year. Jordan was developing slower than all of the other kids.
Some children develop typically and then around age 3 seem to begin to regress- losing the language or motor skills they had learned. Experts say an ideal diagnosis should occur before age 3 and treatments, such as language and behavioral interventions should begin immediately afterwards.
There’s not one symptom but a variety of symptoms. For example, some kids will have great eye contact but no language. And within autism there are different classifications. There’s classic autism, there’s pervasive developmental disorder, there’s Aspergers.
Diagnosis is based on behavior. There is no cause. There is no cure.
More and more it seems like autism is part of our national discourse. But for many of the people I talked to for these stories, autism was something they had never really heard of. Except in one case.
Rainman the movie: Raymond! Raymond! Am I using you Raymond! Yeah… Shut up! He is answering a question from a half-hour ago!
Lynn Cass: Oddly enough, the first movie my husband and I saw together when we were dating was Rainman and that was pretty much all I knew so when the pediatrician said to me, he might have autism, I said to myself, well he can’t have autism because he’s not…I looked it up online and I thought about what that movie was and I thought, oh, well that’s not him. And now, all these years later, I realize if you meet one child with autism, what you’ve met is one child with autism they’re all so vastly different.
That’s Lynn Cass whose son Alex, now 12, has autism.
Much of the last decade has been about her and her husband educating themselves about autism.
He is non-verbal and has his quirks but his parents say he has come a long way. Much of it the result of early intervention behavioral services. Experts say the earlier you get those services, the better the person’s long-term outcome.
In some cases though, a diagnosis may not come until the teen years. Pam Nocera’s son Vince is now 24. From the time he was a year old, she says he didn’t show any interest in interacting with other kids.
Pam Nocera: At the time, I asked questions, I had him tested at various places and nobody could ever tell me what the problem was because he wasn’t a behavioral problem in school, he was smart, his grades were good and those seem to be two things that when they are testing, they look at those two things for signs and he wasn’t exhibiting any of those signs so they weren’t able to tell me what was going on but as a mother I knew something was different.
It wasn’t until he was 15 that Vince was diagnosed.
Vince Nocera: I had uniquenesses about me that I didn’t exactly fit in so to speak with those directly around me, direct peers, but I never thought a great deal of it because in so many words, everybody is different anyway. So…yeah, but still, I did think that I would be unique to a point where it would be conspicuous.
Pam Nocera: Its weird cause its like, sometimes I feel almost easier to think, well, I have a son whose a little bit different, ok, I’ll deal with it but then you have a son whose different and this is an actual diagnosis that goes with it, it changes it up a little bit.
Increasingly there are adults getting diagnosed.
Caitlan Freedman: I was actually diagnosed quite recently. I’m thirty now, I was diagnosed at 29 and this was after several years of research on my part and trying to figure out what was going on because I knew that I was not processing information like other people and I’ve known this from a very young age.
That’s Caitlan Freedman. Asperger’s Syndrome, which she has, wasn’t an official diagnosis until she was 14. Although as a child she exhibited many signs, her parents were very protective of her and didn’t want labeled with anything.
Caitlan Freedman: At that point, autism as a diagnosis was a sentence for being institutionalized. And my parents knew there was something going on but they didn’t want to, I think, to pursue it as aggressively as maybe they should have.
She says it was sort of liberating getting a diagnosis.
Caitlan Freedman: I felt kind of relieved in that I never quite knew whether it was just all in my head because I had so many people tell me, “Oh your just not trying hard enough, oh, if you just tried harder to you know, talk with people, you’d do there’s nothing wrong with you, if you just put a little more effort into it – and I was putting so much effort, I was struggling so much.
Her partner Phil was diagnosed 6 years ago. He’s 46.
Phil Garrow: There was a time after I was diagnosed, there was a period of regrouping, there was a period of saying, OK. Here’s what it is and you are never going to get better from it. There was no amount of therapy, I had had about twenty years of therapy by that time.
It wasn’t an easy thing to hear.
Phil Garrow: I suffered a little bit of a depression, about a month after the diagnosis, to be able to come down and decide what I was going to do with my life now that I knew what the problem was.
For many people, a diagnosis is often coming after they’ve had a wrong diagnosis.
As a child Jeff Hudale was diagnosed with schizophrenia.
Jeff Hudale: When the doctors did some EEGs and the like on me and they saw wait a minute these brain cells don’t match up with a schizo, its like, this is something different.
He was a teenager then and says the new diagnosis didn’t really have much bearing on him.
Jeff Hudale: It was kind of I thought I had this and now I have that.
Its really unsure for some people what it actually means. For some it may be the end. Of sort of wondering and some uncertainty. But for others it’s kind of the beginning. Kim and Richard Antesinis’s nine-year-old son is severely autistic.
Kim Antesinis: We were kind of relieved because we had a diagnosis and we thought that would give us a path to follow and we could work on fixing it and have some resolutions. But there are no resolutions.
Richard Antesinis: The day it happened, it was devastating. The doctor told us our son would never speak to us. Would never be able to take care of himself or feed himself or use the restroom by himself or any of these kinds of things. And he was 16 months old.
Some parents say a diagnosis is sort of its own living entity. It changes with everything else around it.
Lynn Cass: I think that how you cope with a diagnosis evolves over time. I think its still evolving now. Because now that he’s 12 years old, now I’m starting to think about and worry about what is he going to do and be as an adult. Where will he live, what will he be able to do, who will take care of him. Friends of mine and myself we all say to one other, well, I’ve got to live forever, because who will take care of him 20, 30, 40 years from now.
Erika Beras reports on behavioral health issues for WDUQ in Pittsburgh, PA.