Archive for the ‘autism’ Category

Disneyland Disability Passes Make For the Happiest Day on Earth

Tuesday, June 15th, 2010

In case you’re wondering when you read the headline for this post, Disneyland doesn’t give you free passes to families with autism to go to Disneyland. (Gee wouldn’t that be nice… I keep wishing Autism Speaks or some organization would help with that one considering how dang expensive it is to go and how many of our families struggle financially in ways other families don’t. If anyone here’s from Autism Speaks, hope you’re listening).

Anyway, a disability pass means that you go to a separate waiting area from the rest of the folks, often it means waiting in the area near the exit; for some rides it’s using the fast pass lane. It’s true that a family can often skip ahead in most lines/not wait as long. It’s a wonderful and much needed thing when you go to Disneyland and your child has difficulty with crowds, waiting for long periods of time, etc. For those families who give you the stink eye for doing this, hold your head high with the knowledge that these people are clueless about what our kids go through when it comes to downtime, waiting and crowds, high functioning or not. Unless they really want to see first hand what a melt down is like, up close and personal, they shouldn’t bat an eyelash at this much needed accomodation for families with someone on the spectrum.

While it’s very helpful, be aware that Disney also has a policy of only allowing one disabled person to ride a ride at a time (I’m assuming they do this to make it seem more fare, although as I’ve said above, they’re already doing that by providing the accomodation in the first place). Because of this one disabled person per ride police, in a few cases, your wait time might actually be longer (as is often the case with the It’s a Small World ride we found. There’s only one disabled boat compared to the many other boats they have going. Also many of the Fantasyland rides might see you waiting longer because of this policy… keep it in mind if the line isn’t very long and the disabled line is).

The folks at Disneyland will also give you suggestions as to what rides might not be suitable for a child with autism, a very kind and thoughtful service I thought. They marked our ride list/map for us the first time we went and after going on many of the autism unfriendly rides with my neurotypical daughter as a test run for her brother, we agreed on everything they suggested. By the way, you get the pass I’m speaking of by bringing your child to Town Hall first thing when you get there. I’ve heard they ask for a page of an IEP or some proof and I used to bring my page from regional center saying my son has autism and qualifies for services… but in reality they never asked me for anything other than seeing him and seeing all the members of the party riding with him. This is so they can put the appropriate number of people allowed per pass… all family members riding WITH the child get to go together.

Again, we’d never be able to make it through Disneyland without the pass. It just wouldn’t be possible to wait in crowded hot long lines like that without my son combusting. It wouldn’t be worth going. As it is, my son is limited on what he enjoys and what’s too loud or too scary for him (he can’t deal with anything with intense motion, so all rollercoasters and thrill type rides are out, including Star Tours, etc…. and everything in Toon Town is just too darn loud for anyone). That being said he adores Disneyland more than any other place and it’s a super special treat we save for birthdays (or if he’s playing a gig there… see my previous post). Most of the Fantasyland rides are fabulous for him, even though he’s 11, (they’re my favorites too and I”m considerably older than 11). He also love Pirates, Haunted Mansion, Jungle Cruise and the terrific show they have at the end which is worth the price of admission alone, including spectacular fireworks (show your pass and they’ll honor special seating/viewing area for that as well)..

You can also use the pass to get on the tram on the way back if the wait is crowded and endless, which it usually is… a lifesaver, I tell you… we LOVE the folks at Disneyland for doing this.

Best,
Bonnie
www.autisticgenius.com

My Boy’s In the News

Sunday, June 13th, 2010

An article about my son was written in today’s “Acorn” Newspaper. Read about Jakob and his saxophone.

wearing blue for autism awareness day

Thursday, April 1st, 2010

Celebrate Neurodiversity

Celebrate Neurodiversity

Just a quick thought I’d put out there to the universe… am I the only one who really doesn’t get why we’re supposed to wear “blue” for autism awareness day?

To me, it seems like we’re promoting the branding of a company, not a cause. Autism Speaks is known for their blue puzzle piece… they have branded their “corporation” and they certainly don’t speak for all people with Autism, if you follow the discussions amongst those of us living with Autism in our families.

I’ve worked for big corporations before, and I know the power of branding. While I can appreciate the sentiment of getting the word out, spreading awareness about the autistic spectrum, I’m not sure what wearing blue has to do with it.

The goal of branding a cause with a color, is to show your support while perhaps getting a bit of education about the subject across too. In the case of the Autistic Spectrum, I would think that a really nice goal in addition to showing “awareness” would be to separate fact from fiction about those on the autistic spectrum. This would include how Autism is a SPECTRUM disorder, which means it looks very, very different on each person. You seen one person with autism, you’ve seen one person with autism… I’m sure you’ve heard that before.

The reality of a spectrum disorder is that folks with it display symptoms, characteristics, quirks… whatever you want to call it… that fall between being very high functioning and very low functioning. That is to say, on the HF autism end, like those with Asperger’s, you’ll find people who are very eloquent in their speech and thought process, highly intelligent and creative; who often have deficits when it comes to social awareness, social skills, social discourse and a higher sensitivity when it comes to anxiety, sensory issues and theory of mind. On the low end, there are those who cannot speak, those who cannot communicate in any fashion, cognition impairment. Then you’ve got everything and everyone in between… hence the term: spectrum disorder.

So, as far as I’ve always known, a rainbow is the perfect representation of the spectrum and a rainbow is the “branding” of the cause of autism. If we are supposed to be spreading awareness, why are we not wearing rainbows tomorrow?? What’s up with the blue?

I honestly do not understand why Autism Speaks is promoting their own brand over that of Autism.

So tomorrow, for what it’s worth.. I’m wearing every color in my closet… to support Neurodiversity!

what’s in a name

Tuesday, November 3rd, 2009

So the folks who are creating the new DSM (Diagnostic Statistically Manual for those of you who haven’t taken a psych. class), are deciding whether or not to obliterate the term “Asperger’s” in favor of the ASD diagnosis.

The NY Times sums up the debate nicely, in this article .

While Aspie and Asperger’s won’t be gone from the American Lexicon anytime soon, and I’m sure Webster’s isn’t thinking of hitting the white out, I personally don’t see anything wrong with calling those with Asperger’s and those with the PDDNOS diagnosis, people with autistic spectrum disorders. Especially since I know that by using the ASD medical term in lieu of Asperger’s or PDDNOS, millions of children will get healthcare and educational services who would otherwise not under our current, nonsensical standards.

Many California parents already know that those kids and adults with the H.F. autism diagnosis get sorely needed IEP’s and regional center help, while the aspies and pddnos kids are left out in the cold. The bottom line is, the schools, insurance companies and government will look for reasons NOT to give out services in order to save money, why give them an arbitrary way to deny folks help… when the reality is, the difference between HF autism and asperger’s or PDDNOS is really just.. in the name (and maybe in the way the symptoms manifested themselves initially. Children who do not have language delays are considered Asperger’s in the current DSMR, while those who did have language delays and may have the same current functioning level as those with asperger’s are called HF autism).

It’s just a name. So many parents are terrified when they hear the “A” word and are reticent to accept it for their children, resulting in many kids not getting the early intervention they need. Why not work harder on educating people about what the word “Spectrum” means and what a SPECTRUM disorder is? Take the terror out of the word autism.

Again, I can’t imagine the word asperger’s will really take much of a hit if we modify the medical diagnosies…. and a lot of good may come of it.

Still, the powers that be are in the process of deciding. I wish they’d put some money into educating the public about what it is everyone’s squabbling about. And for all those young parents of children with HF autism out there (or asperger’s, or PDDNOS), a rose is a rose is a rose… I worry mostly that the lack of appropriate information and education about what AUTISM is only brings misguided animosity and jealousy from neurotypical parents who are worried that precious funds are being taken away from their children’s education… or the old “I don’t see anyting wrong with him, why is everyone making all the fuss. Maybe he just wants attention.”

I know first hand how frustrating those attitudes can be on a parent of a young child; especially a parent who has to fight tooth and nail to prove their kid needs and deserves all the help he can get.