Autism through the lifespan #4: The Teen Years

Adolescence is a time full of changes. Often emotional, it poses challenges for all teenagers. Those with autism have the same issues as a typical teen – and then some. In the fourth segment in our series Autism through the lifespan, Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports on autism’s impact on the teen years.

Adolescence is a time full of changes. Often emotional, it poses challenges for all teenagers. Those with autism have the same issues as a typical teen – and then some. In the fourth segment in our series Autism through the lifespan, Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports on autism’s impact on the teen years.

Part four of a nine-part series covering autism’s impact through the lifespan.

Note: This story contain brief references to sexuality.

Joy McDaniel has two teenagers. A girl.

Joy McDaniel: My daughter Angel she is 17. I call her Macushla, all right? My darling.

And JJ.

Joy McDaniel: The boy on the other hand, his puberty is going to be the death of me.

 

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Both of her children have autism, a neural-developmental disorder characterized by social and communication impairments. According to the CDC, it affects 1 in 110 children. Those with autism typically don’t respond well to change. And if there is one thing that adolescence is, its change.

 

It can be difficult to maneuver especially for a single mother like Joy McDaniel.

For girls, adolescence usually begins with the onset of menstruation.

Joy McDaniel: She was young, she was 9 when she first started getting her periods and the school wasn’t equipped to handle her. She had zero coping skills, I mean to her, bleeding means your going to die. Or you’re hurt. So she missed had so much school, I actually got pulled in front of the magistrate.

It happened twice.

Joy McDaniel: And I’m in front of the magistrate like sir, please try to understand, I am trying to teach my daughter how to deal with this, how to cope with this, we are trying the hardest we can.

Angel is on the higher functioning side. JJ is severely autistic, non-verbal and has sensory issues. Which with his budding sexuality has presented a new host of problems.

Joy McDaniel: When that thing starts working, he’s going to touch that and he’s also going to vomit. So its like I’m going to have sperm and vomit to clean up and it’s like, yay,my future is looking so bright here.

While the social and mental development for those on the autism spectrum isn’t the same as their typical peers, the hormonal progression is. Adolescence is when changes occur in the brain.

Minshew: If you imagine the developing brain, people have no idea how complex that is, it makes a Mars shot or a Moon shot look like a piece of cake.

That’s Nancy Minshew, a neurologist at the University of Pittsburgh.

For a typically developing teenage brain the pre-frontal cortex is going through a spurt that begins just before puberty and ends in the early 20’s. That’s the part of the brain that controls planning, memory, organization and mood modulation. Those are our adaptive skills or higher-order reasoning. As it matures, teenagers mature. They get better at controlling their impulses and making sound judgments.

But for those with autism that part of the brain just may not develop.

Minshew: As you get older the challenges for social interactions for problem solving, for understanding what people mean when they say becomes so much more difficult.

Suzy Scherff is a research psychologist at Carnegie Mellon University.

Scherff: Adolescence is a really critical time in autism when you start to see big differences emerge. Typically developing kids also take some time learn how to integrate visual information and be able to see the gist and the whole. And that really seems to come to fruition and starts to congeal in adolescence when there are really important brain changes happening and we don’t seem to be seeing that happening with people with autism.

Despite the cerebral maturation that isn’t occurring, the other changes are. Lucinda Wiebe’s son Will is 16.

Wiebe: So how much is hormones and how much is autism?

Not understanding social cues gives the parents of autistic teenagers a new role. Penny Gardner’s son Brian is 17.

Gardner: We were leaving a restaurant and there was a cute girl there with her boyfriend and a couple of other people and he wanted to stop at the table and say hello to her and did kind of say that’s really not appropriate when she’s out with another guy to stop and he didn’t know this girl, he just found her attractive.

That’s the lighter side of what can happen. Duquesne University researchers Tammy Hughes and Larry Sutton have worked with repeat juvenile sex offenders at a state-operated New Castle facility. They were serving time for rapes or sexual assaults. Forty percent, or 16 of the young (inmates) had autism.

Tammy Hughes says the different wiring in the brain is a factor to this type of behavior.

Hughes: When we look at the kids who are offenders, and we look at the way that they came to their act, their thought processes, their problem solving on how they got to their offense is very different if your are a kid with autism than if you are a typical offender.

The offenders were all diagnosed after they were admitted to the facility.

Researcher Larry Sutton says this is an emerging issue amongst autistic teenagers- diagnosed and undiagnosed. Particularly those who are higher functioning.

Sutton: They don’t necessarily have insight in terms of what to do next. They look like they should know, they act like they should know, but the whole process of courtship the whole process of knowing what to do with certain emotions they don’t necessarily know.

Sutton says the same type of behavioral intervention that is used to teach them to learn and unlearn habits while they are young can be used to teach them these types of skills.

Sutton: It’s a matter of investing right now even though its an awkward subject for everybody to talk about, no one likes to talk about sexual issues, nobody likes to talk about basic sexual education but its invest now with some of these awkward areas in a practical sense of how one can address some of these needs versus later on when they are in a criminal justice facility.

Sutton is starting a social groups for autistic adolescents that will specifically focus on sexual development.

12-year-old Matt Dulavitch will be in the group. His mother Cherri.

Dulavitch: Its not just sex, its like, how do you talk to a girl, how do you hold a girls hand, basic stuff that people take for granted.

Matt does not have friends.

Dulavitch: He can’t even make friends how is he going to get a girlfriend but he wants one.

When it comes to sexuality, its different for girls. In the world of autism, they are a minority, at about ¼ of the population.

Lori Zychowski, a psychologist, has supervised the teen girls group at The Watson Institute.

They work on communication skills like conversation and body language. And they talk about friendship, appropriate ways to get a boys attention and self-esteem.

Zychowski: In order to impress a boy they might do outlandish things or their female peers put them up to doing outlandish things that might be embarrassing or cause further social rejection.

Nancy Minshew says bullying comes up repeatedly.

Minshew: Some of these kids will attempt suicide because of how cruelly they are treated.

When Janice Hebert’s daughter was in high school, the intense bullying led to a psychiatric hospitalization.

It came from the boys.

Hebert: She’s a cute girl, a pretty girl and she can carry a conversation but she doesn’t know when someone is making fun of her or demeaning her so instead of backing away if someone was making derogatory statement, she would stay there and the boys would take advantage of her sometimes in a very unfortunate manner.

And it came from the girls. Especially when she joined the swim team.

Hebert: When she passed by and succeeded far better than some of the other children that would be so-called normal, those girls really became nasty with her, ultimately ending in her wanting to stop swimming, she had won tons of awards and medals and it became so intolerable for her. She couldn’t travel with the team because on the bus they just completely harassed her and I couldn’t get the coach and the driver to help out with that so she quit swimming and she never swam since.

For Joy and her daughter Angel, after a tumultuous start, so far, she’s doing ok.

Joy McDaniel: Hello Macushla. Angel: Hey mom Joy McDaniel: How was your day? Angel: Good. Joy McDaniel:Good? Angel: Pretty great actually. Joy McDaniel: Fantastic.

She’s successfully hitting all the milestones of adolescence.

Joy McDaniel: She went to homecoming. With her little boyfriend. And he’s autistic too. And they are ridiculously perfect and adorable. I’ll have to show you pictures, oh my goodness.

Angel: So we would just have some fun, go dance, also taking pictures too…

Bullying is not a problem at her school, says her mother.

Joy McDaniel: The teacher and the para-professional and the support of the principal they talk to the other students and they say, look, we don’t expect you to be their friend. But we will not tolerate you being disrespectful. And when it’s handled like that, that makes all the difference in the world.

With her son JJ, who is 14, there are different considerations.

Joy McDaniel: JJ is classified as severely autistic.

Sometimes her children get along with each other and sometimes they don’t.

Angel: Yeah we’re getting along and sometimes he makes me crazy sometimes. But I still love him as his sister.

When Angel graduates she hopes to enroll in City Connections, a Pittsburgh Public School program for 18-21 year olds with moderate disabilities that allows them to move towards independence- living on their own, working and continuing school. Joy doesn’t know what the future will hold for her son.

Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.