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

Setting Expectations

Preparation for Big Events

General Procedures

Jess at VERVE Magazine was gracious enough to profile me, and Empower Autism in the November issue of her Asheville mag. One of my latest and greatest projects is The Spectrum, which provides social-recreation opportunities for and with people with autism. The lovely Kimberly Miller of The Asheville Club at 151 (schnazzy condo’s ‘atop’ the Hotel Indigo in Asheville) has worked her tail off to help set up an awesome fundraiser on November 6th!

The article in VERVE was totally well-timed to help us promote the event, and I would like to cordially invite all of you, dear readers. Let’s drink wine for autism!

READ THE ARTICLE

COME TO THE EVENT

In March of 2010, an article by Nancy Bagatell appeared in a special issue of Ethos: Journal of the Society for Psychological Anthropology (Vol 38, Issue 1).

It’s called From Cure to Community: Transforming Notions of Autism, and it’s solid. Here are some excerpts:

“The purpose of this article is to explore how individuals with autism are challenging the widely accepted biomedical views of autism and forging an autistic community. Here, I purposefully use the terms autistic and autistic community instead of person-first language (i.e., person with autism). This is the preferred language of the members.”

I like how she focuses on what adults with autism are doing/thinking, instead of what neuro-typicals think about people on the spectrum. I also like it that she goes ahead and says ‘autistic’.

Later in the article, Bagatell draws attention to the increasingly unwieldy range of the autism spectrum, and a trifecta of events which have helped to shape the autism community. Check it:

How is it possible that an autistic community has emerged? Given that, from a biomedical perspective, autism is characterized by significant social and communication deficits and repetitive and stereotyped behaviors, restricted interests and activities (American Psychiatric Association [APA] 1994), people with autism would seem to lack the skills essential for the establishment and maintenance of a community. The emergence of the autistic community can be linked to three historical trends: (1) the broadening of the autism spectrum to include HFA and AD; (2) the emergence of the disability rights movement and, specifically, the self-advocacy movement; and (3) the explosion of computer technology, specifically the Internet.

Good work, Nancy Bagatell. It’s really good to see the community pride trend documented in the scientific literature. Want to read the whole article? DO IT.

Last spring, the Autism Community Center piloted some fabulous activity groups which were designed for people on the autism spectrum. A lot of people had a great time attending cooking, music, theater, art and hiking groups, but, unfortunately, the center closed due to financial challenges. See a video from our old writing and illustrating group!

This fall, Empower Autism is partnering with Dragonfly Forest to bring those activity groups back! We will run groups for 6 week sessions, starting mid-September, under the name ‘The Spectrum’. We have added exciting new clubs like Urban Outings, and are bringing back old favorites like Video Gamers Club, and Hiking Group. Groups and Clubs are generally about 1 hour long, and meet once per week. People will be able to register fully online if they wish, and sign up for more than one group.

Stay tuned for more details on this exciting new partnership!

Both sessions for campers with autism were a huge success this summer! Dragonfly Forest is a free camp for kids with autism, and this year we had two sessions, each with about 70 campers. I’m always happy when the campers enjoy themselves, try new activities like the ropes course and archery, and overcome their anxiety about staying overnight–but this year I was especially proud that our program hired adults with autism to be counselors.

Attempting to recruit adults on the spectrum in a city that I don’t live in was challenging, but I got in touch with a few people, and 4 of them agreed to work at camp. Being a camp counselor is not an easy job–it involves a high level of flexibility, and the culture here at camp is extremely social. There is very little alone time, and the schedule is constantly changing. I was really excited that any adult on the spectrum wanted to be part of it.

Our staff is fairly diverse. We have counselors from different backgrounds, and we spend quite a bit of our training time addressing diversity and encouraging our staff to honestly acknowledge differences, and appreciate them. Having counselors and campers with autism meant that we were also encouraging an appreciation of neurodiversity. Everyone is always receptive to the idea of diversity appreciation, but sometimes the reality of it is more difficult. I’ll be posting more about our experience with this in the next few weeks–stay tuned.

Over the course of my career, I’ve worked with almost 100 families with autism. Each of those families has been really different, but some common themes exist in all of them: the capacity for hard work, a broader definition of what it means to be human, and a hard-won sense of the ridiculous. : )

One of the most rewarding parts of my job at the Autism Society of North Carolina was creating home-programs that included organized systems for addressing difficult parts of the day, social needs, developing maturing interests, and exploring employment possibilities. In these difficult financial times, many people are losing services like those the Autism Society provides, and there are not a lot of private options.

I’ve assembled a team of people at my business, Empower Autism, INC., who are well-versed in autism and family dynamics, and we are designing home-programs privately for family with autism. If you have something that just isn’t quite working in your family or your home, we can design a system or plan to help you address it. I believe that a REAL plan uses the strengths of a family, and fits naturally into the current pattern of the family.

We design creative, appreciative, plans that fit a family’s lifestyle, and we make it affordable.

Give us a call, or send us an email to find out more.
(828) 919-0313. Sylvia@empowerautism.com

Our schedule for this post: FIRST disclaimer, THEN soapbox.

Now, I’ll admit right now that I’m no fluffy optimist. I’m not as bitter and blustery as several of my ahem fellow bloggers, but I do have a sarcastic side, I try not to be too corny.

All that being said, I have high hopes for Autism Awareness Month every year. I truly enjoy the people with autism that I know, and, framed simply, I want others to be aware of how cool it can be to really know someone with autism.

ADDITIONAL DISCLAIMER: Statistically speaking, there are probably people with autism out there that I wouldn’t enjoy, and OF COURSE nobody is a joy to be around ALL the time, including me.

So every April, I get a little geeked out thinking about how more people will find about autism…and then the big month comes, and guess what?
1. My google alerts are full of sob stories and fundraiser alerts.
2. I don’t see any more public appreciation than usual (which isn’t much) for any:

So, since we are calling dibs on months to squawk about stuff, I would like to declare the month of May: The Empowered Autism Appreciation Month. Send me your celebrations, love stories, moments of hilarity, and victories having to do with autism. We can appreciate them together.

I only have a few autism news updates this time around. Someone email me if I’m missing something big (that doesn’t have to do with Jenny McCarthy).

TIME magazine is running a photo essay by Mike Belleme about the autism program at Dragonfly Forest in Philly! I had the privilege of creating this program, and I’m SO proud of it. There is a hilarious picture of me getting mobbed by a bunch of campers on there too. It’s funny what gets immortalized huh?

Check out the photo story!

Mike is a really talented photographer–and he freelances–so you better hire him quick, before he hits the big time!

“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Ok, it’s in the car. Do you want me to get it for you?”

…and this is when I start grinding my teeth. There are a lot of wonderful things about 1:1 services, but an over-dependence on constantly having a personal adult is not one of them. I am too-often reminded of governesses and servants when I watch these failed attempts at professional relationships unfold. Adults who are supposed to be teaching, guiding, and demonstrating independence end up descending into the role of carrier-of-stuff, fetcher-of-forgotten objects, and fall-guy for bad tempers.

To be fair, I’ve totally found myself in this all-purpose, waitress type of role in several of my early direct care jobs. Most places don’t train you how to stay professional, and to empower individuals in 100 small ways each day, instead of taking over.

Saying ‘YOU do it’, is empowering for both sides of a relationship. Should the direct care staff in the example above notice that a kid left his DS behind? Yes. Should said staff be able to predict later trauma when the missing DS is discovered. Yes. Does that mean the direct care staff should trot off to produce the thing? Definitely not.

Instead, consider the following:
“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Cool. Go get it.”

In this scenario, the kid is encouraged for knowing what he wants, and empowered to do something about it.
If this conversation is (later) followed up with the implementation of some system for remembering items, then THAT is something I’m totally willing to pay tax dollars for. I’m not as interested in paying for endless babysitting.

I have seen many, many healthy direct care scenario’s (especially at the Autism Society of NC), with professional staff, and good supervision, and I believe that having really good one-on-one support can help people learn to do stuff for themselves…but only when we refrain from doing stuff for them.