In the second part of our series Autism through the Lifespan, we look at early childhood with an autism spectrum disorder.
Part two of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.
Most families with a child on the autism spectrum divide their lives in 2 segments – before and after the diagnosis.
Astrid Arroyo: Well, the first time of course, I was, crushed. But early on, when he first got his diagnosis I thought with early intervention, everything is gonna be ok, we’ll just work on it. The whole time, I’m thinking you know, by three or five years old, he’ll be typical child.
MORE ON AUTISM:
Visit our Autism page.
That’s Astrid Arroyo, whose son Kai has autism. He’s had hundreds of hours of one-on-one training and has made tremendous progress. It’s not apparent to the untrained eye.
Astrid Arroyo: Right now he’s not even potty-trained. I mean, he is but he’s not fully potty-trained. So he still wears pull-ups. And he’s 9 years old.
The first post-diagnosis step is applying for and getting Behavioral Health Rehabilitation Services or wraparound. The earlier a child gets them, the better their long-term outcome. For the most part, the tailored services are all paid for by medical assistance. It’s an intensely personal process – the specialists make house calls.
There are about 20 people that work with Kai. He has specialized physicians, language instructors, behavior and occupational therapists – even feeding specialists.
He never switched from baby foods to solids.
Astrid Arroyo: He only eats butterscotch pudding. And he drinks milk from a bottle and that’s it.
Heath, his younger brother, often helps feed him.
Astrid Arroyo: They’re only 16 months apart. They have the same friends. Heath has been able to teach him a lot of stuff. Going back to whenever they were little, Kai didn’t walk until he was about two years old but even before that he didn’t crawl and he learned to crawl because of Heath.
According to the Centers for Disease Control and Prevention, one out of 110 children now have an autism spectrum disorder.
Autism impacts thinking, behavior, language and ability to relate to others. The severity varies. It may have a co-existing condition – common ones are epilepsy or gastrointestinal illnesses or attention deficit hyperactivity disorder. There is no cause and there is no cure. Autism Spectrum Disorders present differently in everyone who has it.
Kai for example, understands most of what he hears but has the expressive language of a 3-year-old. He is social and affectionate. And he looks up to his little brother.
The rate of autism is steadily increasing. The numbers are high but many in the field say they aren’t even altogether accurate. Jana Iverson is a psychology professor at The University of Pittsburgh.
Jana Iverson: It varies a lot by economic and urban or rural environments. So children who are white and living in urban settings are more likely to receive a diagnosis earlier than minority children and children who are living in rural areas are likely to receive a diagnosis even later.
Astrid is originally from Puerto Rico. When she went to see doctors she was told not to worry because Kai’s speech problems were the result of her speaking Spanish at home. But she didn’t speak it at home. And even if she did, it wouldn’t have caused the sort of issues her son was having.
Astrid Arroyo: A lot of Spanish speaking families here are going through the same thing where their kids are late, you know they’re not talking at the right time and when they go to the pediatrician, the pediatrician will say it’s because you speak Spanish in the home just give it some time and come back. The problem with that is when you say it to the parents they come back when the kids are 5 or 6 so they missed out on early intervention.
Dr. Diego Chaves Gnecco says with dual languages, pediatricians often don’t diagnose. He’s working to fix that.
He runs Salud Para Ninos, a bilingual clinic for kids and works as a developmental behavioral pediatrician at Children’s Hospital of Pittsburgh. Nationally, Hispanics are less likely to be diagnosed with autism. There aren’t local statistics. But based on his work and the lack of outreach, he knows one thing.
Diego Chaves Gnecco: If you are Hispanic in the United States you are less likely to be diagnosed with autism. If you are Hispanic in Southwestern Pennsylvania, you are even less likely to be diagnosed with autism.
Part of it, he says is the “invisibility” of the Latino community. Elsewhere, there tend to be geographical ethnic enclaves. Here, the community is scattered. According to the census, in Allegheny County, there are 8,000 Latinos. About one third of them are children.
The doctor works in the outlying counties as well. Children in rural areas also tend to be under-diagnosed.
Diego Chaves Gnecco: We started going to Washington county. We drove for about thirty minutes from here, those families were underserved, they didn’t have a doctor, they have never seen a pediatrician for their kids.
Diego Chaves Gnecco: We started going to Washington county. We drove for about thirty minutes from here, those families were underserved, they didn’t have a doctor, they have never seen a pediatrician for their kids.
Sometimes providers miss the signs. But other times parents don’t seek help because they don’t know how to or where to go.
Legal status can play a role. Astrid has been doing outreach within the Latino community.
Astrid Arroyo: We learned now, when we do trainings not to ask for a return address or even have a mailing list just to have them come and to have them listen. Because I think a lot of people that are immigrants if they have to register, if they have to provide a phone, an address, any information like that – they’re not going to come.
If a child doesn’t have legal status then they can’t qualify for medical assistance – the first step in obtaining wrap-around services.
Paying for treatment out of pocket can be costly.
Sometimes, she thinks of moving back to Puerto Rico.
Astrid Arroyo: I would love to. Just for the fact that’s its Puerto Rico, the weather is nice and my parents are there. I know for a fact that there are no services there.
Not having services in Puerto Rico is why Wendy Lopez moved here. Her 9-year-old son is severely autistic. Paying for services would have cost her upwards of 25,000 a year. She says she would have moved anywhere to provide him with what he needed. She picked Pittsburgh because she had family here and had researched the state’s services.
Wendy Lopez: I never thought I would be living somewhere else. I always thought I would live my whole life in Puerto Rico but having this situation made me realize how lucky I am of having this opportunity of living here, providing Victor with all of the resources he needs.
African-Americans are also under-diagnosed. Terry Scheffey of Family Behavioral Resources does outreach in the community. He says there’s about a two-year diagnosis gap.
Terry Scheffey: A lot of minority kids don’t see the same physician all the time so they don’t pick up on it. A lot are diagnosed with behavioral problems instead of autism. And there’s a huge gap in the medical system period.
Sometimes, parents get a diagnosis and don’t pursue treatment for their children.
Terry Scheffey: A lot of parents say, I got the information and it hurt so bad, I just waited. A lot of times what happens is when when the kids get to school age, the school tells them. Before your child is at school age you can pretty much say oh, he’ll grow out of it. When your child gets to school, you pretty much know when your child is falling behind – I think reality hits them.
He is starting a support group for African-American parents. In the Pittsburgh area, there are about a dozen of different types of support groups. Astrid belongs to several.
Astrid Arroyo: Everything that I know and everything that I have been able to get for my son has been through other parents who have shared their experience.
It helps, parents say, to be around others who are also going through similar experiences. And it also helps to talk about their feelings.
Patti McCloud’s son Jordan is 13. For her, one of the hardest things is watching other children hit milestones when her son hasn’t even hit the most basic.
Patti McCloud: I’m hoping that someday, I could have sworn he said a word yesterday. I could have sworn he was laying there and he said the word mom. And then I think, do I just want him to say the word.
Oftentimes they say it helps to talk about how hard something as simple as going to the grocery store can be.
Lynn Cass’s son Alex is 12.
That’s him.
Lynn Cass: That’s kind of unsettling, upsetting, sometimes people are really rude and will stare at him and you see them whispering and that bothers you.
Despite the upheaval that follows the initial diagnosis, many parents say they get used to it.
Astrid Arroyo.
Astrid Arroyo: For the first three years of Kai’s life I was miserable. I think that was my rock bottom. In fact, I think finding out he had autism was kind of like a wake-up call and it was just one of the things, I’m like, ok, this is the way, I cannot change it.
She has come to peace with her life and even grown to love it.
Astrid Arroyo: Right now I’m enjoying everything that’s going on right now, everything just fell into place, everything is perfect at school, we have therapy going, his relationship with his brother is just perfect and we can go out now, we can go out to restaurants and I just want to be as happy as I can right now and enjoy it. Because I know (laughs) once puberty comes…
Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.
