My Circle of Girls

dawn-dudleyLet’s be honest, we all want our children to make friends. And with autism, finding and maintaining friends can be met with varying levels of challenge. So one mom, Dawn Dudley, took it upon herself to make it a little easier for her daughter – as well as other girls touched by autism – with creation of My Circle of Girls. This group, based in North Carolina, was founded by Dudley to bring girls with autism and their families together – with the opportunity to make friends, know each others’ struggles and celebrate victories.

Each month the group gets together for social and service activities in the community. The purpose is focused on getting the girls to bond while offering them fun experiences. And in just 18 short months since the group was formed, it’s already getting get praise – in fact, Dawn says that parents have told her that the group has been more effective than some of the therapies they’re pursuing for their daughters.

This is such a great concept, and obviously a much-needed one. With autism being diagnosed in boys four times more than girls, there really aren’t any girl-specific programs available. So while My Circle of Girls is based in NC, there is already interest coming in from other states to build similar groups, so we hope this is a format that gets picked up for many other young ladies to benefit from.

Check out more on My Circle of Girls.

Lynsey, Community Manager

Is Autism Really On the Rise?

www.cdc.gov

www.cdc.gov

Two new interesting studies have come out – one focused on the rate of autism and the other on a possible hormone that is linked with social difficulties.

The rate of autism has been continuously increasing over the years, with the latest figures showing that 1 in 68 children are diagnosed with autism. The rate increase hasn’t been attributed to anything specifically, and questions are mounting as to what has caused the increase. A new study, however, may have provided an answer – the rate is likely due to a change in the way children are being classified and diagnosed. A team from Penn State University looked at special education enrollment and found that the increase in students designated as having autism could be offset by nearly equal decrease in students diagnosed with other intellectual disabilities often seen along with autism. So conditions that were once likely classified as something else are now being identified as autism, probably due to broader awareness.

Another study showed that children with autism who struggle with “theory of mind” – the social skills that deals with the realization that other people have different perspectives, feelings and experiences – have lower vasopressin levels. Vasopressin is a hormone that helps regulate blood pressure and may play a role in social behavior. There are currently no medications that effectively treat social deficits, so this could prove a target for future focus.

Lynsey, Community Manager

Latest Diagnostic Tool – Your Nose?

noseSo this is an interesting one…a new study suggests that it may be possible to diagnose autism by giving children a sniff test. Yes, that’s right, the act of smelling may be able to provide tremendous insight.

Why? As covered in the NY Times, most people instinctively alter their breathing when they come in contact with certain smells – they take a big whiff with pleasant smells and limit their breathing with foul smells. However, as discussed in this research, children with autism do not make this natural adjustment. Based on their sniff test, the researchers – who were not told which participants had autism – were able to correctly identify which children did have autism 81% of the time.

Plus, what they also found was that the further removed an autistic child’s sniff response was from the average for ‘typically’ developing children, the more severe the child’s social impairments were.

Looking back on the impact of odors, different smells definitely affected Kyle when he was younger – like smoking and garbage smells. Those smells would actually make him gag or throw up, which made it a bit tricky being out in public – he would either be holding his nose, or commenting on someone smoking, or even throwing up after walking by a smelly trash can or dumpster! (And speaking of gross smells, if Kyle heard someone let off gas, he would giggle uncontrollably – as Jenifer says, it was something!)
Lynsey, Community Manager

 

Reaction to Jerry Seinfeld’s Self-Diagnosis

NBC News

NBC News

If you’ve spent any time online the last few days, you’re very likely to have come across the news that comedian Jerry Seinfeld speculates he is on the autism spectrum. If you haven’t yet seen/heard it, this all came out of an interview he did with NBC News’s Brian Williams, during which he said:

“I think on a very drawn-out scale, I think I’m on the spectrum. Basic social engagement is really a struggle. I’m very literal, when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as—as dysfunctional. I just think of it as an alternative mindset.”

When I first read what he had to say, my initial reaction was–well, that could be possible.  And certainly lots of respect to him to share something that personal.  But then my next thought was – people are going to be mad. And I can definitely understand that too. People may (and did, here for example…) think—just because Jerry Seinfeld struggles with social interaction doesn’t mean he has autism…many people are not comfortable socially, but that doesn’t mean you can just diagnose yourself as being autistic. And like I said, I completely get that perspective.

But what I was happy to see was that, for the most part, the reception of his self-diagnosis was met with positivity. The spectrum is wide and the severity at which autism can impact someone is greatly varied. With as many people being diagnosed with autism today, we can bet that there are many others who may have very high-functioning autism that don’t have an official diagnosis – and are able to get through life without much, or any, real intervention.  And he’s not the first celebrity to recognize himself with autism – others such as Dan Aykroyd and Daryl Hannah also are believed to have autism.

What I really like from this is that he went out there and identified himself with something that often carries stigma.  If nothing else, he was able to bring some awareness and light to the autism discussion and he’s also done much for autism in a charitable fashion as well. And while he, himself, may not represent the majority of those touched by autism and the impairment it can have on their development, if he’s able to use his public status to further raise awareness, then hats off to him.

Lynsey, Community Manager

CAR Autism Roadmap

CAR

If you’re in the Philadelphia area (or the tri-state area), there’s a great new resource now available from The Children’s Hospital of Philadelphia. The hospital’s Center for Autism Research (CAR) created a website for families touched by autism called the CAR Autism Roadmap.

It’s a helpful place to visit if you’re just starting out after a diagnosis or even if you’ve had autism as part of your life for years because it offers guidance and a huge directory for those searching for therapists, support groups, doctors, dentists, education support, etc. It also has articles written by CHOP staff and specialists.

When you’re starting out with a diagnosis, figuring out what to do next – or who to go to – can be completely overwhelming, so this Roadmap can help make that transition smoother. Or, if you’re looking for some new therapies or just new local resources, this site can help with that too.

You can check it out here.

Lynsey, Community Manager

Autism Rate Rises to 1 in 68

1in68The CDC now reports that the number of U.S. children with autism has soared to 1 in 68 – this is a 30% increase since it had estimated that 1 in 88 children have the disorder only two years ago.

To get this estimate, they looked at records in 2010 for 8-year-olds in 11 states. Through their research they also saw an increase in the number of children with higher IQs who fall on the autism spectrum – and a wide range of results depending on where they live (for example, only 1 in 175 was diagnosed with autism in Alabama, while 1 in 45 was diagnosed in New Jersey).

Why the big jump? No one can say for sure, but it could be due the growing awareness of autism and better identification of it in children.

And, also eye-opening, as noted in this NPR article, a 2011 study found that in South Korea, 1 in 38 children met the criteria for autism – and the U.S. is now on pace to reach the same conclusion within a few years.

Lynsey, Community Manager

Will New Diagnostic Criteria Lower Autism Rates?

According to a new study, the answer could be – yes. As we talked about here, DSM-5 was released last year – which included new diagnostic criteria for autism. Some experts have said that the new criteria set a higher threshold for autism than the previous version (DSM-4).  This may be true.DSM-5 Manual of Mental Disorders

As noted in this article, researchers applied the new symptom checklist to more than 6,000 children who already met the old definitions for autism and related disorders, the study team found that about 19% of kids would not get an autism diagnosis today. The difference between the new and older criteria is that the new criteria use seven diagnostic criteria (versus 12 criteria in the previous edition) and the new version takes historical behavior into consideration along with current behavior.

When the criteria first came out last year, there was already concern from the autism community that the new criteria would potentially impact – even remove — an existing diagnosis – and strip someone of the therapy (at least financially) that was proving beneficial.  (there was also reaction over the fact that Asperger’s is now falling under the general umbrella of autism versus being separated out.)

So is this study supporting those concerns? Although there are professionals in the field that have said parents and caregivers shouldn’t worry that they’ll need to get their children ‘re-diagnosed,” there are some parents out there already saying this exact thing has happened – and they are now fighting to get back the services their children need.

Lynsey, Community Manager

 

8 Inspiring Members of the Autism Community

 

IMDb

IMDb

Huffington Post just unveiled a short list of people in the public eye who have spoken out about their Asperger’s and autism diagnosis – helping to shed a positive light on it. Some of those on the list are not surprising – like Temple Grandin (who has professor, advocate and author as three of her many titles) – but most, I think you’llfind, are people you may not have known about. Although you may have recently heard that Daryl Hannah (actress from the movie Splash!) talked about her Asperger’s diagnosis – and singer Susan Boyle was also diagnosed with Asperger’s–you may be surprised to know that Dan Aykroyd– yes, that Dan Aykroyd from SNL, Ghostbusters, The Blues Brothers, and about a million other movies) – has been diagnosed with both Tourette syndrome and Asperger’s. In fact, his Asperger’s actually inspired the movie Ghostbusters – he said that one of his symptoms was an obsession with ghosts and law enforcement and that he “became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the ideal of my film Ghostbusters was born.

Some others include Alexis Wineman – who served as Miss. Montana, the first Miss. America contestant with autism; James Durbin, a past American Idol contestant who found music to be a therapy; and, Heather Kuzmich, a former contestant on America’s Top Model. (Check out the full list and article here.)

Interesting list, and noted that the majority of those listed have an Asperger’s diagnosis. Granted that these members of the autism community are on the more high-functioning side, and recognizing that the spectrum is broad; however, I’m glad that all of these people have come forward to talk about their diagnosis because this can only continue to help increase awareness, and maybe even more acceptance of it as well. Whether it’s talking about the obstacles they’ve had to overcome (and/or continue to deal with), the therapies they’ve found, or even serving as a role model, utilizing their platform to share their experiences is, I’d agree, inspiring.

Lynsey, Community Manager