Single mom Paula Jones is a master juggler, handling her college course load, her job working for an ophthalmologist, and most importantly her 13-year-old son, Mitchell, who is considered high functioning on the autism spectrum. “His first diagnosis came when he was three – PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified).”

Later, Mitchell received a different diagnosis. “When he was older and in the school system, which he started at age 3 (in special education preK), he was diagnosed Aspergers,” Paula says. She took it in stride, rolling with the punches as she always did.

“Aspergers kids don’t usually have the language delay (that Mitchell had) so PDD-NOS was probably more accurate at the time. However, as a teen his diagnosis does look more like Aspergers,” she says. Paula shares what this – and life with Mitchell – looks like, in her own words:

Q: Let’s go back to the beginning. How did you discover that Mitchell was on the autism spectrum?

A: When Mitchell was two, his sister five, and his older brother eight, Mitchell was still not talking. He was babbling a lot and it sounded like speech but no real words. He was 'disconnected' from us, he was very interactive, and imaginative but had some unusual ways about him. He would toe walk a bit, he seemed oblivious to pain, and would line up his cars, line up the items in the refrigerator label side towards us, fix the carpet if it were folded over, freak out if something was in his room that didn't belong or if we took a different route home -- things like that. But mostly i was concerned about his lack of speech. The rest I just thought was cute and shrugged it off to the fact that everyone is different. The other developmental delays I didn't notice. In fact, he walked very early, at 9 months.

At some point when he was between two and three, I asked his pediatrician for a referral to a specialist to be evaluated. I knew the speech was an indication that there might be something wrong. They did extensive testing on him, at two different places, including all the “rule out tests” such as MRIs, EKGs, and genetics testing. Two developmental pediatricians, a neurologist, and a psychiatrist have all diagnosed him with autism.

Q: What was life like after the first diagnosis of PDD-NOS?

A: (Mitchell) was already receiving treatment from a speech therapist, a special daycare center, an occupational therapist, and a physical therapist from ages 2-4. That continued once he was in the school system.

Q: What treatment is he receiving now?

A: He is currently receiving ABA (Applied Behavioral Analysis) therapy for certain target behaviors that are impeding him at school, such as avoidance of school work and inappropriate social behaviors. He also currently sees a psychiatrist for the medications.

Q: What are your feelings about Mitchell’s progress to date?

A: Right now we are having the worst time we've had in his development, particularly in school. Even after constant counseling and modeling of appropriate ways to deal with kids at school, he gets very frustrated, depressed, and angry at school. If he has a friend over he does fine, and he does well at youth group, but in the school setting its a nightmare for him (and me). He reacts violently when misunderstood and the kids don't accept him for the most part and even when they do, he often misinterprets it. There’s a bit of paranoia there also.

We are in limbo right now, not a fun place to be. We took him out of the school after the last aggressive act he reacted to. Being proactive, we've decided before things get worse to temporarily place him on homebound until I can get him enrolled in a private school I found. He's been accepted and we go for testing next week. There has also been a shift in his meds -- amounts and types -- and there's no real way to evaluate how they are working until he gets back into the school setting.

Q: Tell us a bit about Mitchell’s meds. Are medications often used for children on the autism spectrum?
 
A: Medication alone is not usually very helpful, but a combination of meds and therapy is our hope, personally. He has been through all sorts of combinations of meds, and some worked for him for awhile. Some, like Risperdal, we didn’t want to keep him on for too long because they can have lifelong side effects that don't go away, even after discontinuation.

His current meds are to help with his anxieties, focusing problems (ADHD-type symptoms), and his aggression (to give a buffer of time where he can think before he reacts). He is currently on Clonidine, Abilify, and Imipramine. The Imipramine is a new med for him, having only been on it about three weeks now. He has had bad reactions with some meds and we saw it right away, the same day, but so far so good.

Q: What does Mitchell’s ABA therapy entail?

A: I think Mitchell actually finds some comfort/interest in his ABA therapy, mainly his behavior sheet, because to him that's pretty much what it is. The behavior sheet is an accounting of the day, where I check off line by line things that we have listed that he needed to accomplish that day. Lines may say, “Checked for homework,” the next may say, “Did nightly bedtime routine (shower, deodorant, brush teeth),” and another may say, “Brought home student planner.” He wants to see as I’m checking it off, to determine how much "Screen time" he has earned. His motivation for doing the things we have targeted is to earn screen time, meaning computer and video games, the things he loves to do.

Some things are weighted more than others, so that he might decide he doesn’t have to do his homework because he already did everything else and he will still earn about an hour of screen time. To him, that might be enough that day. So then homework will become weighted heavier than something else, like brushing teeth. We have only been doing ABA since December, and since we've been in limbo we've had to discontinue the real structured part of it because he wasn't in a school setting. We will be returning to it on Monday. The key to ABA is detail and consistency. Once you learn the basic structure you can chart your own goals.

Q: You said that you and Mitchell were in limbo right now. What happens next?

A: He starts his new school on Monday. This is a smaller private, Christian school. The lady who runs it has made it her mission to help educate children that don't do well in the public school system -- kids like Mitchell, but other kids as well, for their own reasons, who don't do well. They have small classrooms, and they go with their own group from class/subject to class, staying with the same group of about 10 kids in each class. So our goal right now is to help Mitchell with this new classroom environment. We need to help him focus and improve on his social skills.

He will also continue to work with his ABA therapist as the therapist helps us to formulate goals and overcome target behaviors that need to be eliminated or increased. These include handling frustration without aggression, doing what needs to be done without avoidance or lying, and feeling the immediate repercussions and rewards of doing what has been expected of him in concrete terms for him to understand.
Hopefully the meds will also help in key areas, such as: his difficulty focusing, providing a buffer so he doesn't "react" and has time to think things over, and alleviating his anxieties and depression.

Q: Of course, every child is more than a diagnosis. What do you wish people knew about Mitchell?

A: Mitchell loves animals and seems sometimes to prefer the company of them to humans. However, as awkward as he can be, Mitchell is truly a very social person, sometimes too much so. He doesn't enjoy the outdoors as much as I would like, but has become a very promising keyboardist and composer of his own techno music.

Q: Every mother has dreams. What do you dream for Mitchell?

A: Long term, I hope that he can overcome these behaviors enough to be a self-sufficient adult, attending college and/or getting a job that he can keep. In other words, I want what we all want for our children, to be able to support themselves, be responsible for his own behaviors, and have it together enough to be happy, have a family, and be able to give and help others in our community.

Related Features:

• Kaboose.com's Autism Guide

• Parenting Moments 

• Parenting Center