Empower Autism

On Being Politically Correct

Last night, in the first Presidential debate 2012, Barack Obama mentioned autism. He said something along the lines of, “families with an autistic child depend on Medicaid”. Which is true. I was encouraged that autism got a little mention in such a public venue…but my twitterfeed and timeline were chock full of people huffily correcting the president, not on the strength of his statement, or the truth of it, but on his phrasing.

Technically, the (current) politically correct term is ‘child with autism’, which exemplifies ‘person-first language’, a rule of thumb that always puts the person in the primary position of the phrase (i.e person who uses a wheelchair instead of ‘wheelchair bound’).

I see the point of person first language, just like I see the point of being careful about how we phrase gender things and race things. To me, the point of careful phrasing is to guide how we are supposed to THINK about abilities/gender/race in a better way, collectively. Correct phrasing is an ongoing prompt to transcend whatever prejudices I harbor.

It is a practice that everyone fails at sometimes. If we simple reduce ‘politically correct’ to another political pitfall then we have lost the point, the only good point, of a practice that becomes more like witch hunt every day.

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  • Filed under: Soapbox
  • 20 Year-old with Aspergers feels too Isolated

    You can ASK SYLVIA by clicking on ‘ASK’ above.

    Dear Sylvia,
    My 20 year old with asperger’s is having issues meeting people and making friends. He goes to the community college but does not have the skills needed to make friends. He really enjoys history, libraries and traveling. He likes to watch wrestling and the ghost hunter shows on tv.
    –Ready for Suggestions

    Dear Ready,
    I share your distress that there are not more helpful programs for adults on the spectrum. Does your 20 year old understand and accept his or her diagnosis? If so, you could start by sending him/her an email with the video below (of an adult discussing how Aspergers affects him socially in professional and academic settings).

    Before you write your email, read our handout on written explanations, and gather your thoughts. I suggest something like, “This video reminded me of you. I’d like to help you make and keep some friends if you want to. Here is what I think we could do:

  • Join the National Railway Historical Society (or some other history club)
  • Contact the History Department at Western Carolina and see what events or clubs they have to offer
  • Join the bookclub at the Canton Library
  • If we meet anyone we like at these clubs, we can see if they ever would want to come over and watch ghost hunters on TV.
    Is it OK with you if we try these things?”

    I hope this helps! Let me know how it goes
    . –Sylvia

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  • Filed under: ASK SYLVIA
  • Isn’t There a Pill for Autism?

    pills+2

    Almost every family I’ve worked with considers some kind of medication for their child with autism at some point. Lots of people end up getting prescribed some kind of medication. In fact, more than half the teens with autism that I know take at least one medication. They actually take some pretty serious stuff.

    I’m distressed every time I go to look up research about meds for autism. It’s not that I think medication is bad–I’ve actually seen some kids really benefit from taking psychotropic/anti-psychotic meds – but I think the system and the background research is imprecise.

    Consider the following:

  • Only 9 studies of psychotropic meds and autism were considered high-quality in a recent systematic review from 2000 – 2010.
  • These nine reviewed different medications and different age groups.
  • There are 9 million doctor visits in regard to “Off Label” use of anti-psychotic medications. That means the FDA hasn’t approved the med to be used in the way the doctor prescribed it.
  • Factors unrelated to clinical presentation seem highly associated with prescribing practices.That means factors like being in foster care or having medicaid increase your chances of being prescribed 3 or more anti-psychotics.
  • 18% of kids 0-2 years old (with autism, on medicaid) use a psychotropic medication.
  • The lack of research is distressing for families, and potentially harmful for kids.

    Happy People are Better at Life

    I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.

    Many children (people) have to spend a large portion of their day practicing things they are bad at. This is especially true for a lot of kid with autism, who often have to attend a myriad of deficit-based therapies, in addition to going to school (which is usually inherently social).

    I am actually really impressed with how well kids with autism manage to cope, considering how much of this negativity and criticism they put up with every day. Shoot, if someone even tells me two criticisms in a row about myself I feel like crying :)

    In fact, on days that are packed full of stuff I don’t feel like doing, I’m a whole lot worse at my life. I’m more likely to be late, to be snappy or slow-witted, and I don’t have any innovative ideas. However, let me have a day where I get to go for a walk, laugh with somebody, hang out with some kids and watch/play sports–or even any ONE of those things, I’m so much happier and I get so much more done. I resent the hard parts less when I get to do stuff I’m good at too.

    I don’t think I’m alone in this. I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.

    For more on increasing happiness etc, check out this great book by June Groden.

    2012 Empower Autism Resource List!

    Hi Everyone,

    We had a really successful event this week, and I’m really pleased with the updated resource list. I was happy to see so many autism professionals getting to know each other and exchanging contact info.

    Please check out this downloadable PDF of Autism Resources in Western North Carolina: Empower Autism Resource List

    In creating this list, I was really struck by a couple of things.

    1. There are so many local resources! and so many specialists! This means the era of one person being “The Person” for autism in our area is over–which is great! We need options and specialties.

    2. Look at all the recreation options! There might not be something for everyone, or something that is perfectly tailored for each child, but we are doing SO MUCH better than we were doing even two years ago.

    NICE WORK ASHEVILLE :)

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  • Filed under: Uncategorized
  • Autism Professional Lunch

    Autism Lunch

    Empower Autism is hosting a lunchtime networking event at the Family Support Network! We are excited to welcome members of the professional community to this casual drop-in event. We plan to provide light food, lots of introductions, and a follow-up contact list for the people who attended. If you’re interested in stopping by, please RSVP to Sylvia via email: sylvia@empowerautism.com

    THANKS!

    Hectic Holidays

    holiday-stress-meltdown
    The holidays are not always easy for people on the autism spectrum. Holiday parties, lengthy meals with relatives, crowded houses, and gift-anxiety can be really stressful for people on the spectrum. The behavior expectations are different, and familiar adults are often acting unpredictably, and generally have less time to patiently explain what is going on. Quiet alone-time is at a premium for everyone, and most people are a little edgy. In fact, sometimes the holidays are not a ‘holiday’ at all for people with autism. Here are a few tips that may diffuse some holiday drama in your family.

    Structure in the Home

  • Post a calendar for your child. On the calendar, mark school-days, non-school days, major holiday events, visiting relatives, travel, and other events of importance (to the child).
  • Use a daily schedule, even if you usually don’t. Holidays are full anxiety, and your child will probably appreciate having a schedule to depend on—even if it just subtly posted somewhere obvious.
  • Consider making and posting a list of leisure activities your child can do (they can help you make it) in various areas of the house. Then you can help them structure long periods of leisure time by writing stuff like ‘living room choice’, ‘play room choice’, on their schedule.
  • Setting Expectations

  • If you would like your child to behave differently than they usually do, write down your new expectations, and go over them calmly, about a day before you want the child to act differently. Go over them again (using the written list) right before the new expectations go into effect.
  • Don’t be afraid to reward your child for good behavior. If you are going to use a reward, write down what it will be, and what it is for. Use the system above to communicate your reward system.
  • Preparation for Big Events

  • Remind your family (kindly, gently) that your child has autism, and might not behave in ways that everyone expects. Some families find that a thoughtfully composed email works best. Specifically address the way your child might behave if they receive a gift they do not like, taste a food they don’t like, get overwhelmed, don’t know how to answer a question, or have to share something they weren’t expecting to.
  • Tell your child (in writing or in pictures) what the event will be like for them. Prepare them for the sensory experience, the crowd, the people etc.
  • Make a plan with your child for what they should do if they need a quiet break. You might designate a quiet place at the event location where they can chill out, or a person they can ask to take them for a walk outside.
  • General Procedures

  • Take the time to praise your child.
  • Try your best to refrain from over-coaching, or nitpicking. This will keep both of you more relaxed.
  • If your child needs more decompression time, or needs to stim, pace, rock, or whatever, find ways to give them that time.
  • Here is this info as a Printable PDF, in case you’d like to share it. Good luck! Please share any of your own holiday tips if you wish!

    Holiday Gift-Making Party!

    photo-HolidayShoppingSpree

    Common Holiday Scenario in Autismville:

    Parent: Ok, let’s pick out a gift for Mama
    ASD child: NO. I want elmo/thomas/Xbox 360!
    Parent: Yes, I know. At Christmas we give gifts to other people. What would Mama like?
    ASD child: I don’t know.
    Parent: Well, do you want to get her this necklace?
    ASD child: No.

    This scenario is even more awkward for a single parent attempting to help their child pick out or make a gift for them.

    This year, Empower Autism is hosting an alternative method for gift-giving. We are structuring the gift process so that kids create presents for their parents with the help of our volunteers. They help wrap them up, label them and bring them back to their parents (who are munching snacks and socializing in another room if they wish).

    When: Sunday Dec 11th 3-5pm
    Where: UNCA (New Hall room 118)
    Cost: $5/child
    Please RSVP via email sylvia@empowerautism.com if you would like to attend. Let us know how many adults and kids to expect.

    Cooking Group in Asheville!

    cooking 1

    Our popular cooking group is back! We have received so many compliments and requests to continue this program, so we revised it and are offering it again this fall. It is for adults and older teens in the Asheville, NC area. Please contact us for more information. THANKS!

    2nd Grader with Autism Struggles to Finish Work

    You can ASK SYLVIA by clicking on ‘ASK’ above.

    Dear Sylvia,
    My son is 7 years old in the second grade, and at school is takes too long to copy assignments and complete his work . How can I help him improve? He also randomly forgets to pack up all that he needs to bring home from school.

    Hello there!
    I have seen many many kids (with and without autism) go through this same phenomenon. First, I’ll ask this: Is he capable of copying them down with a little more time? Could he have some formal accommodations at school (through his IEP) to receive a list of assignments or already-copied out handouts? Could he be officially responsible for doing a few less problems, or shorter writing assignments? Can you negotiate with the teacher for him to complete assignments at home each night?

    Many kids on the spectrum take longer to complete their work, and do not want to stop part way through. If they will need to stop partway, I suggest using a written explanation in advance, so they will be prepared. When you get to the homework part of the day, I suggest using a list or schedule of assignments so that your son will know when he will be finished. Feel free to schedule breaks in there if he has a lot to complete.

    As for packing the correct things: Are the items he needs based on what day of the week it is? For example, does he always need his reading book on Mondays or is it random? Does he generally need the same basic items? I’ve seen good results from people making a laminated tag on the outside of a kid’s backpack with a picture of something they like, and a list of what to pack up. See this example.
    packing visual

    Let me know if this works!

    Thanks for writing,
    Sylvia

    You too can ASK SYLVIA by clicking on the ASK tab above.