By Jeanne Holverstott, M.S.
Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?
Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.
It’s time to search for activities to fill the day that do not involve electronics. You’ll want to set new rules on Wii, DS, Xbox, PS3, computer and television usage. It’s also important to find meaningful opportunities for interaction.
Children with ASDs approach summer with mixed emotions. Many parents probably share this ambivalence. Just like the school year, summer vacation is permeated with ups and downs. So, what do we do with all of that time? Take the following into consideration:
· In seeking consistency and routine, we hope to reduce the unknown and the gray that causes anxiety and opens Pandora’s box. We hope to create a microcosm of predictability in a world of dynamic instability. Change in the ASD world can be bad. Yet, how helpful and how realistic is our static world? Perhaps the static world we strive for unwittingly weakens the coping skills, frustration tolerance, adaptability and resiliency that undergirds functioning in a dynamic world. Summer could be viewed as a litmus test for how our children with ASD react to change that comes yearly.
· That being said, I’m not encouraging schedules to be thrown out the door. No, only those game systems. Again, I kid. Make money in this recession and sell them at Game Stop. Schedules are helpful, but overbooking your kids with camps, lessons, and trips might also not be the solution.
· To help promote a healthy schedule that allows for family time and for time working on those interaction skills, consider picking one or two activities in which you can involve yourself as a parent in some capacity. If your child joins a social skills group, exchange numbers with the other family members and have the kids over on the weekend. If you join a “team,” consider recording the interactions (which many other parents do!) so that you can review your child’s interactions with him or her and compare them to other teammates. If you hear the ice cream truck, make it a teachable moment: Walk with your child to buy that bombpop and shape what develops. In the end, paying for a camp, a class, a lesson is not always necessary. Taking the time to set up meaningful interactions (such as play dates) can provide the same benefit.
· As for those electronics I suggested you sell, they are a necessary evil as a stress reliever, entertainment and an escape. You can put constraints on game play – the length of time and the time of day – but don’t necessarily follow my father’s adage: The sun is out, you should be too. Video games might prove a nice break midday when the heat is at its worst or after an exciting morning.
There is a quote you might appreciate at this time: “The longer the summer vacation, the harder the fall.”
Jeanne Holverstott is an autism spectrum specialist who practices at the Responsive Centers in Overland Park. To ask Jeanne a question about autism, send e-mail to editor@spectrumconnection.net, and put “Question” in the subject line.
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By Kate Duffy
A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.
That’s why the short answer to Toni’s question is this: do what you need to do.
And don’t do it alone.
Team up with the people in your life to introduce your teen to the world of work. When you get burned out – and you will – you’ll have reinforcements to soldier on to do the hard work of teaching your kid that he has to work and that not everyone is as fascinated with Pokemon, fighter planes, railroad time schedules as he is. You want your teen to join the outside world in a safe, organized manner, so bring in those folks you think would be good role models and champions for your teen.
How involved should you and your team become with your kid’s job search? There is no one right answer, but remember that our kids are generally younger than their chronological age, so that a 16 year old on the spectrum is more like an 11 or 12 year old emotionally.
The end goal is for your teen to get some work experience and to be out in the world, so he understands more about the way the world operates. Given that, it’s not as important how your teen gets a job, just that he has one.
For many, the first job is sacking groceries. So you definitely want to know your neighborhood grocery store manager. You’ll want to talk to the manager before your teen does, letting him or her know about your teen’s strengths and problems. In addition, you’ll want to let the manager know something about autism, especially how prevalent it is, how it affects families throughout the community. By hiring your teen, tell the manager, the store is helping the autism community, which is loyal to supportive businesses.
Do you need to let your teen know about all your behind-the-scene maneuvering? No, you don’t, and it’s better if you don’t. Each kid is different, and so you have to tailor the approach to the kid. For instance, both of my sons are on the spectrum, but they are very different from each other temperamentally. With my oldest son, Nick, who has a lot of anxiety, I frequently have had to go around his back to get him to try new things. That’s how he started playing chess, which he loves, and is a skill he has made money from for a number of years.
Playing chess on a team and then being the team’s assistant coach for three years was a great experience for Nick. Not only was his chess coach a wonderful mentor for him, he also taught Nick how to be a leader and supervisor. For three years, til he got a paying job as an assistant chess coach, Nick worked with Mr. Cooper and learned the important workplace skills of showing up on time, conversing politely even when you don’t feel like it, and managing others – in this case, kindergartners to 8th graders, not a particularly easy workforce.
When he was 14, he also worked for my friend Necia, building her small business a data base of clients and contacts. Three afternoons a week that summer, he walked to her home-based business a half mile away and got to work. What he didn’t know, though, was that I had asked Necia to let him work for her because I knew she would be a good mentor for him, that he would learn about the world in a safe, organized way with her.
Don’t feel badly about intervening in your teen’s vocational life. There is a lot of competition for jobs right now, and our kids need to be part of a team – even if they don’t think they do. Sign them up for Vocational Rehabilitation services too because the VR counselors will then be a part of your team, which gives you a bit of a breather. Remember, the type of skills it takes to get a job do not come naturally to our teens. That’s why the unemployment and underemployment rate for people on the spectrum is about 92 percent.
So get your team together and remember you are not alone. There are lots of us out there doing behind the scenes coaching with our kids. Just keep the end goal in mind and plug away.
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Rumor has it that the new Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-V) will eliminate the diagnostic category of Asperger’s Syndrome, 16 years after its inception in the DSM-IV. “Asperger” symptoms will be combined with those of another mild form of autism to create a new category to be named.
I work in schools with kids diagnosed with Asperger’s Syndrome and I am the parent of a young adult with the same diagnosis. I would invite anyone who considers AS a “mild” form of Autism, to walk a day in the shoes of parents and educators who live through the daily struggles of this disorder. Yes, these kids do have verbal communication; yes, they respond outwardly to their environment; yes, they look somewhat like their peers, at least when they are still, calm, and not trying to change the topic of every conversation to the subject of WWII weaponry!
If my son’s condition were “mild,” at age 20 he would be able to wash his own hair, understand the concept of time, be able to drive, have social interactions, and comprehend the difference between $20 and $200. He would be able to do basic algebra, fill out college applications, or even consider taking a credit class at the Jr. college. He would not need a para at school, a job coach at work, Medicaid, or SSI.
While the range of impairment varies widely, AS is far from “mild.” I would hope that any changes to the DSM will reflect the “severity” and challenges of this form of Autism.
I am worried that changing the DSM will confuse the public; folks with Asperger’s are just now being recognized for their unique needs. What’s more, I see the needs of Aspies being so very different from classic autism. Our kids have mastered reading and writing and are verbal. They are struggling with acceptance and navigating social circles, and as a result they often have coexisting conditions like anxiety and depression.
My high school-age son is quite aware that he is different, but is similar enough to “typical” kids that he blends in. I fear that he will fall through the cracks.
The other issue this raises is his (and others’) self-identification into a special group. If he’s no longer an “Aspie,” what does that mean?
My son was diagnosed with Asperger’s 8 years ago, he’s 18 now. He appears normal outwardly, he’s extremely intelligent, he excelled at Algebra, Geometry, Trigometry, but he struggles to read body language, make eye contact, “get sarcasm” or jokes. You say, “Hey, what’s up”? He still looks up. The kids at school thought this was hilarious, however; it was extremely painful, for him to experience.
I don’t know about them being calm, my son gets anxious when he’s in a new environment, or in large crowds, and he will attempt to take over the conversation and talk about computers. If he’s not Aspergers, then what does he become? We’ve educated him on Asperger’s Syndrome, bought books for him to read, now we just tell him, oops, sorry, they’ve made a mistake? Really?
PLEASE DO NOT eradicate the Aspergers diagnosis! I am an educator with 32 years teaching experience,3 degrees and the parent of a 16 yr old girl with ASD!!! She looks “normal” just dont talk about vampires,John Lennon,or the Beatles..she STILL needs help brushing her hair,choosing her clothes, getting food..she will NEVER go to college or ever live on her own..she has full time para support in school,attends monthly socail skills classes,sees a therapist for MORE help on social issues and I work with her every night on school work..she can barely add or subtract cant make change doesnt get sarcasm,or humor and the phone NEVER rings to go out with “friends”..she is easily gullible and could easily be at risk were she to venture out alone at a mall etc..this will never change she is what she is..she has Aspergers a higher but equally and maybe even more challenging form of Autism this diagnosis needs to remain so we are able to access what FEW servces that are available for ASD kids..most of which I pay for OUT OF MY POCKET!! This “invisible” handicap is the worst..removing the diagnosis woudl be devasting to this population and the families that are trying to support them.