Spencer Griffin is a 22-year-old Aspie who not only writes a weekly blog reviewing indie music but he also writes poetry, composes his own songs and is studying linguistics at a local JC. He’s planning on recording a CD on his original songs this summer.

3 Quick Questions with Spencer Griffin:

What made you want to start your blog?
“I just figured people might want to know about songs I really like, since only a handful of people seem to already be aware of these songs. This way I can give more exposure to music I feel deserves a slightly bigger audience. The songs I review are relatively new to the airwaves but performed by mostly established artists. Through writing my reviews I hope to engage the reader to seek out and listen.”

When did you start getting interested in indie music?
“It’s a little hard to say…I’ve been listening to Bruce Springsteen, Bonnie Raitt and Rickie Lee Jones since I was in first grade. Typically these artists are not classified as indie however, one day in middle school I discovered a station that played not only their music but others that had that folk-rocky, singer/songwriter-ish sound, and through that I developed a love of indie music.”

If you could spend 1 hour with any musical artist – living or dead – who would it be and why?
“Hooo-boy! That’s a difficult one!!! (long thoughtful pause) Probably John Lennon.”

Why?
“Because I feel like he comes from the same background as I did – being a musician who has poetic, creative ideas, yet doesn’t quite manage to understand people the way a typical musician of his time would.”

What’s Spencer’s latest indie music pick? Read his blog, Spencer Griffin’s New Music Wednesdays. Watch Spencer at an L.A. area poetry slam via YouTube.

You probably wonder what that phrase in the title means especially since I use it as a signature on all my texts, emails and on Facebook. It’s a phrase used by our scuba instructor to get us to always breathe underwater, because as he says if you’re not bubbling you’re either sucking in oxygen or holding your breath. The latter can be very bad to do because you can get this thing called an air-embolism, and if it’s bad enough, you can die. Anyway, that’s not the only reason I’m writing this. I was asked to write a little on why my Dad and I dive.

One reason is I had to take a P.E. class for college. My Mom saw a scuba class and asked if I wanted to try it, and of course I said yes! Anyway my Mom signed my Dad up so he would be able take me home, and he didn’t know that at the time.

So we went to the classes and we passed the lecture and lab classes and got certified as beginner divers. About a week after we got our certification card we went to Hawaii for Christmas with our family. We got to dive one day, it was better than some ways than California because the water WAS WARM!!!

And it also had a wide variety of animals. For example: we found a cave with sea turtles, and since it was a shallow cave we each took turns going in, taking pictures, since it’s illegal to touch them intentionally, however they can touch you, which is good because when I went into the cave, one of them hit me on the shoulder! At the time I thought it was my Dad trying to get my attention, but when I looked around I saw a turtle face in my face, and I guess you can say I jumped, or rather since you’re weightless, vibrated a little.

I also swam with a turtle that came from the surface and swam over the back of it, and took a picture of it like I was riding piggy-back on it! From the cave we then swam along a wall with tons of different corral and fish. My favorite ones looked like a unicorn; actually their nickname was The Unicorn Fish!

The last thing I want to say is, the other great thing about scuba diving, other than it’s another world, is its soooo quiet. Anyway, I hope I gave you a reason to look into diving because it’s so fun!

Thanks to Daytripping Mom I discovered that AMC offers special showings of new family-friendly movies in an environment that accepts the sensory issues of children on the Autism Spectrum and with ADD/ADHD. Movies include the upcoming Shrek 4 and Toy Story 3.

Instead of the usual loud blast of sound, the volume is turned down and instead of a dark theater, the lights are on. It’s also accepted that moviegoers may need to get out of their seats, fidget or walk up and down.

The only downside is that the movies are shown at the earliest move time, 10AM and for those of us living on the Ventura Coast, the nearest participating AMC is in the San Fernando Valley.

I’m sure there are ASAP members who might like to try attending AMC’s sensory sensitive showings. Take our poll and let us know!

Thanks to a Twitter by Craig Newmark of Craigslist.org (yes, that Craig!) I heard that Asperger’s was to officially be placed on the Autism Spectrum, which means it could lose it’s status as a separate diagnosis from Autism itself.

According to this report from NPR News,a panel of researchers created by the American Psychiatric Association had decided to officially place Asperger’s inside the category of Autism Spectrum Disorders in 5th edition of the Diagnostic and Statistical Manual (DSM), the official diagnostic guide of mental disorders.

I believe that this change will be difficult for some people with Asperger’s, as they will be lumped in with people who have severe autism. Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome,
agrees, according to NPR News.

It also concerns me that Asperger’s and Autism are considered “mental disorders,” rather than the more accurate, neurological disorders. Mental disorders are often associated with people who are considered insane, and that is not what Asperger’s or Autism is.

I also wonder why people who have Asperger’s appear to progress from infancy, perhaps with some odd behaviors, but generally talk and walk by appropriate milestone ages, whereas people with severe autism often progress to toddler or pre-school age then suddenly re-gress. I believe these aspects of Asperger’s and Autism have not been studied or discerned enough.

On the other hand, officially putting the diagnosis of Asperger’s on the high end of the Autism Spectrum may make it easier for those with Asperger’s to get benefits via state and federal governments and school districts. Imagine now being able to officially say, “My child has autism,” to an IEP panel and not be hassled about a child’s diagnosis being Asperger’s, which has often been considered a lesser-than-need than autism. Or in my daughter’s case, being poohed-poohed about needing special help because some of her academics abilities were advanced.

And how will this change affect our name ASAP: Asperger’s Support for Adolescents Plus? For right now, it won’t. We’re still a social support group for teens and young adults on the high end of the Autism Spectrum and that means those with Asperger’s and High Functioning Autism Diagnosis who can and are willing to communicate.

BTW, if you’re on Twitter, I would highly recommend following Craig. He’s very involved in consumer and health issues, and his tweets are often where I first hear of interesting news about those topics. And of course, we hope you’ll follow us, @ASAPAspergers

Temple Grandin is perhaps the world’s most famous autistic personality and finally a film has been made about her life struggles in the 1960s and 70s. Starring Claire Danes as Ms. Grandin, the HBO movie will be shown on Feb. 6 at 8PM. It highlights how recognition of her unique talents and support of that uniqueness led her to become a PhD and an expert on cattle care.

Do you have a child, no matter how old, with Autism, Asperger’s or Epilepsy? Then Amalia Starr’s book is an absolute must read!

Beyond the usual “help” books on neurological disorders, Raising Brandon is about the emotional and spiritual journey that Amalia Starr must take in order to help her child become an independent adult. With her now 36-year-old son diagnosed with epilepsy at an early age, she was shamed into keeping the diagnosis a secret for years while she struggled to get help for her son’s learning disabilities. Many of these disabilities are now attributed to Asperger’s Syndrome, which Brandon was diagnosed with in his early 30s.

This mother’s transformative journey has led to a healthier relationship with her son, removing many of the confusing and frustrating roadblocks that kept her from actually helping her son, who has now lived on his own and on his own terms, for 12 years.

Below is a extensive interview with Ms. Starr, whose insight on how to relate to children on the Autism Spectrum will aid parents in helping their children become independent and emotionally healthy adults.

“Acceptance Creates Love.” ~ Amalia Starr

ASAP: If you could list 3 important ways to have a better relationship with your Asperger’s or special needs child, what would those be?

Amalia Starr: “For me it’s all about acceptance. Accepting your child where he or she is, and you might not like it, and it may not be easy to do — it wasn’t easy for me. But once I did accept him for exactly for he is and who he was, it completely changed everything.

“It’s really about giving up a lot of how we’ve been taught in the past. Acceptance of anybody as anybody, is probably one of the greatest gifts. Acceptance creates love.

“Once I could accept him, respect followed. I found I was much more respectful of Brandon. Children with any disability are most often not respected by anyone. I find that people feel they can get away with it. However they can treat them, they just treat them. When you look in the mirror can you say, ‘I did the best I could for my child?’ Sometimes the answer is no. At least it was for me. I had to make amends for that.

“Did he change? He completely changed. I also had given up my high expectations. People said, ‘You are crazy!’ I say, try it!  And he began to develop in ways I never expected.

“This actually happened after he had already became independent. He was able to speak up for himself in a way I had never seen before. He began to trust me. And the trust — to take a risk, so difficult for someone like Brandon. He enjoys being around me more. And so do I enjoy being around him. And by acceptance, I truly focused on what he could do. I stopped focusing on what he could not do. I focused strictly on what he could do.

“I truly listen to Brandon now. I listen to even the silence. And listening is not only through the ears, and this is so important for me. But listening is through the eyes, I can see how he can feels. Mothers especially…nobody understands our kids the way we do. Especially those that are less verbal or have difficulty communicating.”

ASAP: Of the many teen and young adults with Asperger’s that I know, many of them do not have a father who is involved with their care or they do not lend the support the primary caregiver, usually the mother, needs. Much like you describe Brandon’s father in the book. What advice do you have on this topic?

Amalia Starr: “I hear it a lot about this myself. Being that I went through it. I found it fascinating that I could watch my husband be in denial while Brandon could have a grand mal (now called a tonic-clonic seizure) at his feet. It just proves how strong denial is.

“But I have an interesting take on this. I gave a workshop for fathers with children with disability. One man stood up and said ‘you just don’t get it. When it comes to helping our kids with special needs, if we can’t fix it we aren’t interested. It makes us feel terrible!’ He was screaming this.

“He says, ‘Our mentality is to fix everything, and when we cannot, we distance ourselves or we’ll just walk away.’

“So I told him, for moms, we want to make things better. We find ways to help our children. We nurture and we continue on the path until we get the results we want. We are driven.

“I also told him that we want our children that we gave birth to, to be the best that they can be. And he was silent.

“We definitely want to help these men understand what we want when we’re asking for help for our kids, for our children who have disabilities. We must ask in a way that helps them understand. We have to say, ‘I understand that you want to fix it, but I’m not asking you to fix it. But I need your help, I need your support.’ Say exactly what you want. It’s a very important piece of the puzzle especially if we want our husbands to help. This helps them come out of denial and support us and support their children.”

Be as kind as you can to your spouse, advises Ms. Starr. “We don’t want to alienate them. We want them with us. We want their support. We (mothers) need to get hold of our emotions, to control ourselves, move toward our spouse, our husbands, wanting to connect with them, as opposed to pushing them away. When our anger is escalated that’s where we really run into difficulties. Angry words come out as opposed to ‘please help me.’ ”

ASAP: In reading your book, I see that Brandon received tremendous help from Regional Center. However, many young people with Asperger’s are rejected by Regional Center as not being disabled enough. Do you have any advice on working with Regional Center to get the help a child needs?

Amalia Starr: “I didn’t even know about regional centers until Brandon was 23. We didn’t even know it existed!” until a dean at a vocational boarding school told her about it. “If you have epilepsy, Regional Center will welcome you with open arms. We were so well-received, we were shocked. They couldn’t do enough.”

Ms. Starr does caution, however, that all Regional Centers are not created equal and “within each Regional Center all counselors are not the same. “One took a liking to Brandon which is very rare because he usually offends people. Of course, this is before severe cuts, 14 years ago. So she was terrific.

“I also learned that how to befriend people at any Regional Center meeting. Parents who are angry, frustrated — and all of these things are true and real — however, if we want to get services from some place like the Regional Center, then we need to understand how we will get the most for our child: be kind, be soft spoken, gentle, listen; then, when you get the opportunity to speak, then go for it. It’s like a dance; you have to know when to step in and step out without stepping on anyone’s toes. They are shocked when they get a parent who is balanced, centered, calm.”

ASAP: You mention how many people around you were not supportive of getting Social Security for Brandon. What benefits has Social Security provided Brandon and are there any cons to having it?

Amalia Starr: “The ability to get assistance has allowed him to become independent and to live on his own. He knows how much he’s going to get. He’s able to live his life accordingly with the funds he gets. Without that, I’m not certain how he would exist out there independently.

“Social Security is for those who are not able to help themselves; I don’t think he’s a sponger. If the seizures are under control he will get back to work. He was working for many years. He now has the financial means to live. I don’t see anything negative (about having Social Security).”

ASAP: Any final advice for parents who want to see their children become independent adults?

Amalia Starr: “We must back up, we must allow them to have space. If we don’t allow them to go, they will never grow. They are so fearful and I don’t blame them — I was that way.”

Ms. Starr says we can’t hold our kids on a “tight leash” and if we don’t let them try to live independently “they will never develop to the level that they can.

“We have to find the courage within,” she adds. “It’s really not about the kids, it’s about us. If we’re not developing, guess what, they won’t either. The healthier we are emotionally and physically, the healthier they will become. Helping them sometimes is just letting go.”

Amalia Starr offers presentations, workshops and private consultations. For more information see her Website or call 310.281.1108. You can also follow her on Twitter @AutismMomExpert

Reading Amalia Starr’s book
on raising a son diagnosed with learning disorders, epilepsy, and ultimately Asperger’s Syndrome, was an insight into a journey many of us take raising children on the spectrum. For me it was a validation of how I’ve come around to parenting and now guiding my own child with Asperger’s.

I now accept who my child is, and I have far less focus on what or who she is not. Acceptance, says Amalia, is everything. “Acceptance leads to respect,” she says, and respect leads to a better relationship between parent and child, no matter how old either is. In this case, Amalia’s child is a 36-year-old man who has lived on his own, and own his own terms, for 12 years.

In the near future I’ll reveal more of Amalia’s sage advice and her struggles to get to this point in life with her son. I had the opportunity to interview this wonderful woman who has never stopped trying to figure out how to help her son and how to have a healthier relationship with him. I’m going through my interview notes and will post ASAP.

My daughter Em has been asking to ride horses for some time now. I knew from research that horse riding is therapeutic and sometimes life changing for many people with physical and neurological differences, including those on the Autism Spectrum.

A little reluctant about the price of horse riding lessons and the ability of an instructor to understand the needs of someone with Asperger’s, colored my search for something suitable. There is a program in Ojai, CA, but the drive held me back and returning to the space where Emelia felt unwelcome in school kept her back.

After days of hearing about how much Em wanted to ride a horse, I put the word out to the ASAP network. One of our members heard of a program called Ride-On Therapeutic Horsemanship in Thousand Oaks. Luckily, I moved on it quickly, getting the program just as it was finishing one riding session and about to begin another. Emelia has had two riding lessons so far, and she seems meant for the saddle!

With just these two lessons, Em has already shown an increase in maturity, and her ability to handle the reigns and post in the saddle has given her an instant boost of self-confidence. “Riding Beans has been very helpful to me,” she says. “You learn balance, and confidence. You learn to use your body to communicate with the horse, which helps you to be more aware of your own body. You also learn to be more aware of your surroundings. I am really glad I get to ride Beans. She has been really great, and helped me a lot.”

As the credit card commercial says, “Priceless.” The real cost? Not bad, really. $45 per lesson ($40 per lesson if I paid for seven lessons up front). The price covers everything, including a borrowed helmet, but we’ll be going shopping for Emelia’s own helmet soon. You do need to sign a liability waiver and have a doctor sign a form stating that the person is cleared to ride horses and indicating any special medical needs.

We’ll keep ASAP up-to-date on her progress and post information on when Ride-On’s next sessions are available for signing up.

I am positively smitten by Adam, a new romantic comedy featuring a young man with Asperger’s who navigates a relationship with his new neighbor, a Neurotypical “NT” woman. Having seen it twice, I’m eager to see it again.

ASAP is going to head out as a group to see Adam soon, since it’s now showing on screens in Ventura County. I’ve asked our members if they prefer to see it this Saturday, August 22 or Tuesday evening August 25 and it looks like Tuesday is winning out. An email will go out Friday to let our membership know more about the movie outing.

Adam is not for every young adult Aspie, however. If the Aspie teen or young adult in your life is not ready to discuss having romantic relationships or is very sensitive about certain subject matters, you may want to screen the movie first. And I highly recommend that all parents, grandparents and other supporters see this film.

Watch the trailer here: http://www.foxsearchlight.com/adam/ and hopefully we’ll see you at the movies soon!

The new romantic comedy Adam, in L.A. theatres starting July 29, is a winner!

Our newly formed committee to seek non-profit status was invited to an advanced screening of the Fox Searchlight film at the Fox lot last week. And we were more than pleased with the depiction of a young man with Asperger’s Syndrome who falls in love with his NT (neurotypical) upstairs neighbor.

Delightfully funny, the movie has its serious side too, showing the difficult realities that young people with Asperger’s often face as they try to navigate social situations. Parents may want to bring a box of tissues for those stark moments when they see their own child in the character Adam, as he seeks to form a loving relationship.

See the trailer here: http://www.foxsearchlight.com/adam/

Will Aspies themselves like the movie? Hard to say. The movie is not a fairy tale but it is moving; having a feature film that focuses on the life of someone with Asperger’s is a new experience, and one that is not steeped in fantasy.

Adam opens in L.A. theatres Wed July 29 and in Santa Barbara August 14. We’re not sure yet if it will come to Ventura County theatres, so we’ll at least plan for an ASAP trip to SB to see the movie.