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Posts Tagged ‘Asperger Syndrome’

MIXED EMOTIONS: A Mother and Son Response to the DSM-5 Change

February 2, 2012 23 comments

Editor’s note: In this blog, Wills and Monica share their feelings about the possibility that planned revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will cause him to “lose his diagnosis” of autism. As Autism Speaks Chief Science Officer Geri Dawson explained in a recent statement and webchat, preliminary reports may have overestimated the number of individuals who would lose or be denied a diagnosis under the proposed new definition of autism spectrum disorder (ASD). Autism Speaks is proactively working to determine how the new DSM will affect diagnoses and to ensure that no one affected by autism symptoms loses the services they need. Stayed tuned.  

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This is a guest blog post by author Monica Holloway, who wrote “Cowboy & Wills,” and her son Wills, a 14 year old on the spectrum. This post has 2 parts – first is Wills’ reaction to the DSM-5 changing, and then Monica’s reaction to Wills.

Wills and Monica
Wills and Monica

Wills writes…

(Monica’s note: Wills watches the evening news every night for current events, and we were watching together when this (the DSM-5) was announced as a possibility. As you can see, Wills has taken it as fact, even though we’ve talked to him about this. Wills is being mainstreamed in the Fall. This was in place long before Wills saw this newscast.)

I have been on the autism spectrum now for fourteen years. Ending a fourteen-year journey through such hardship, fear and compulsiveness seemed to be unheard of. To see that goal finally come into view is truly unbelievable. Little by little, I inched my way off the spectrum, overcoming so much fear and anxiety.

Now to possibly be considered “not autistic” simply over joys me.

Nearly ten years ago, I was diagnosed with autism. That marked the start of a ten year long marathon that might be coming to a close in the near future. When I saw Brian Williams say that “Aspergers might not be considered autism,” I jumped for joy along with everyone with Aspergers, I assume.

That announcement meant the world to me, and I will remember it for the rest of my life.

There are pros and cons involved in no longer being autistic. Like special needs schools. I am now too advanced for my special needs school. I will likely go to a different school in the fall. Another is, special needs services and counseling. But I think that these are helpful to anyone.

For the hundreds of thousands of people with Aspergers, we finally did it!

Monica’s writes…

As Wills’ mother, I find his take on the possibility of changing the DSM to not include Aspergers Syndrome (Wills’ diagnosis) incredibly heartfelt, as well as heartbreaking. Through endless conversations and therapy sessions, we felt that Wills was comfortable and accepting of his diagnosis. It’s painful (and yet understandable) to  see that he has been hoping to come off the autistic spectrum. He is vocal and positive about his autism, often speaking to younger groups of children about his experiences. We saw him confident in who he was.

Wills is fourteen years old. If this had come up when he was first diagnosed (we had him in therapy when he was eighteen months old), he would not have received the services that have been instrumental in his improvement.

As a young child, Wills was considered “high functioning,” but he still had many social, academic and personal issues that were debilitating. He was unable to stay in a classroom without a shadow, use a public restroom, interact with his peers, sit through any kind of school assembly, balance on a bicycle, hold a pencil or pen properly, sit in a restaurant —and the list goes on.

My worry is that children like Wills will no longer be eligible for the services he received—the very services that gave him a chance at living his life as a relaxed person, fully integrated into society.

I was surprised to see that Wills was so relieved to hear that he might not be “autistic” anymore, and that this was a great accomplishment to him. And in so many ways, it is an incredible accomplishment. He’s worked very hard, but I know other children and other families who have also worked just as hard without the same results. Who can say why some children improve while others continue to struggle? And that’s not to say that Wills no longer has issues. There is plenty to work on.

He continues in his social skills group, speech and language therapy, and sees an educational therapist to keep himself up to grade level. But these are not life-altering problems. His improvement is a miracle to me—a miracle that I want other families and children to experience.

My son is my heart, and I want him to be proud of himself whomever he turns out to be. If he is (or is not) considered diagnostically “autistic,” it’s irrelevant in terms of the way I see him, but it is obviously not irrelevant to the way he sees himself. I’m proud of Wills for writing about his true feelings. His happiness and self-esteem are critical, of course, to his leading a happy life- which is all we want for our child. There is, as I said before, work to be done.

Have you had these conversations with your children and family? Tell us what you think by leaving a comment and by sharing this post. 


My child has joined a ‘mainstream’ classroom but is struggling. What can help?

August 26, 2011 15 comments


Today’s “Got Questions?” response again comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe

The U.S. Individuals with Disabilities Education Act (IDEA) requires schools to include children with disabilities in the least restrictive classroom settings that are possible. At the same time, studies show that different levels of so-called “mainstreaming” present different benefits and challenges.1 And parental preference often varies.2 So the first question to ask yourself is “what type of school placement is the best for my child?”

For instance, you have the option of full inclusion, with all classes taught in a mainstream environment, or partial mainstream, with some proportion of classes taught in a more supportive setting. I also encourage parents to keep in mind the potential advantages of a specialist autism school. Making these decisions should always involve a consultation between parents, teachers and the pupil with an autism spectrum disorder (ASD).

Beyond teaching support, we know that bullying and social exclusion affects the mainstream-school experience of many children with ASD. A recent survey estimated that 44% of children with ASD have been bullied.3 Bullying, in turn, can lead to an increased social isolation and mental health difficulties. Another study suggested that the support of classmates is very important to making the mainstream experience a success for the student with autism.4

One method for encouraging peer relationships is a technique called Circle of Friends, where the child with ASD is at the center of a peer group. This group periodically works on specific goals. Another method, which avoids such a strong focus on the child, is to work on social skills in private or with a group of other children with ASD.

Of course, teacher training remains pivotal to supporting the success of children with ASD in a mainstream classroom. Federal law requires that teachers make reasonable adjustments to their teaching strategies and classroom environment to accommodate the needs of pupils with disabilities. In particular, teachers should be encouraged to adjust the content and delivery of the curriculum, to consider the sensory needs of the pupil, and to welcome the input of both parents and special-needs students when planning their educational programs.

Here are some useful resources, along with references to the studies I mentioned:

Resources:

1. The Autism Speaks School Community Tool Kit
2. The Asperger Syndrome/HFA and the Classroom chapter of the Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit
3. Bullying and ASD: A Guide for School Staff (UK)
4. IEPs, iPads and Bullies: 10 Tips from a Dad Who’s Been There, a recent Family Services blog from dad James Vaughan

References:
1. Full inclusion and students with autism. Mesibov GB, Shea V. J Autism Dev Disord. 1996 Jun;26(3):337-46.
2. Parental perspectives on inclusion: effects of autism and Down syndrome. Kasari C, Freeman SF, Bauminger N, Alkin MC. J Autism Dev Disord. 1999 Aug;29(4):297-305.
3. Bullying among children with autism and the influence of comorbidity with ADHD: a population-based study. Montes G, Halterman JS. Ambul Pediatr. 2007 May-Jun;7(3):253-7.
4. Inclusion as social practice: views of children with autism.  Ochs E, Kremer T, Solomon O, Sirota K. Social Development. 2001;10(3):399–419.

Got more questions? Please email us at gotquestions@autismspeaks.org. Thanks.


Diagnosing Autism Spectrum Disorder

June 20, 2011 48 comments

Parents are usually the first to notice the early signs or “red flags” of autism spectrum disorder.  Maybe it was something different they noticed about their child at birthday party, or the child not developing like a sibling. What was the experience that led you to seek professional advice for your child?

How did you feel when you or your child received an autism diagnosis? What were your initial steps? What advice would you share with someone who has been recently diagnosed? 

The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.

Please join us Wednesday, June 22nd at 5 pm EST for ‘100 Day Toolkit’ LIVE Facebook chat with the Family Services Staff. 

Parenthood – “Damage Control”

January 5, 2011 4 comments

On this week’s episode “Damage Control” of Parenthood, Haddie invites her friend Alex over for dinner. When he arrives at Adam and Kristina’s, he is immediately faced with Max’s honesty.

Have you ever had a situation where your child’s blatant honesty has come through? If so, how did you handle it?

Laura Shumaker wrote a post sharing her own version, Don’t Tell Mom the Babysitter’s Fat.

To watch this episode in full click here.

For more on NBC’s ‘Parenthood’ visit here!

In Their Own Words – Evan’s U2 Experience

November 11, 2010 19 comments

This “In Their Own Words” is by Denise Corbin-Kumar, of Fort Wayne, Indiana.  She is the mother of two boys, one, Evan, has been diagnosed with PDD-NOS, but his school’s testing showed Asperger Syndrome.

My younger son, Evan, has been a challenging child. He was diagnosed with Autism Spectrum Disorder when he was about 5, but up until that point, I just knew that something wasn’t quite right with that kid. He was hyper, into everything, and stubborn. But he was also very loving, very coordinated, and he loved music. When he couldn’t talk, he could sing, and U2 was one of Evan’s favorites.

Evan and U2 go way back. When Evan was 4 months old, the CD “All That You Can’t Leave Behind” was released. We bought it as we left my sister Jenni’s house in Meadville, PA and listened to it all of the way back to Indiana. Everyday when I’d drive Alex to school, I’d listen to that cd, come home singing the songs, and put Evan down for his afternoon nap. I noticed that the song “Walk On” was my choice song to sing, as I rocked him to sleep. As Evan got older, he’d fuss until I started singing that song to him. It seemed to calm him down, so I kept singing it to him everyday. It worked for both of us!

About a year later, the U2 Live in Boston DVD hit the shelves, and Evan loved it! He’d be sitting on the floor in front of the TV, sucking his thumb, and holding a cloth diaper in his hand, watching Bono. If I turned the TV off, or changed the channel, he’d cry and throw a fit! So, I just left it on, and we were both happy!

The song “Beautiful Day” became another one of Evan’s favorites at this time. At age 2, Evan could barely talk, but he’d hum along with the U2 songs, and sometimes he’d sing the end of the phrases. When I’d put him in his bed to sleep, we’d sing a lot of U2 songs, but “Beautiful Day” was one he’d always be happy to hear. I knew that I could use music to teach him how to communicate with people so he wasn’t so mad all of the time.

As U2 released more cd’s, Evan learned the songs and sang along. He didn’t refer to U2 as “U2″, but he called them “Bodo” and when he could speak more clearly, “Bono”. One of his favorite songs is “Out of Control”, and when Evan gets, as he calls it, “that wild feeling inside”, he’ll just sing out like Bono “I’m out of control!!”

We decided that we were going to take Evan to a U2 concert. I had worried for a long time that Evan wouldn’t be able to handle the loud noise of the concert or the huge crowd. Neither of these things were a problem for him. The stage was huge, with lights everywhere. Evan really, really LOVES lights! (He wants to turn them all on, all the time, everywhere we go!)

So, when the woman at the U2 concert said very loudly to her male companion “I’d NEVER bring my kid to a concert like this!!” I yelled at her “why not??” She looked away from me when she heard my reply. She wouldn’t understand anyway! In fact, there were quite a few kids at the concert, so I guess I’m not the only one who wanted to share a great night with my kids.

When U2 finally took the stage on Saturday night, Evan was just screaming “Bono, I’m here to see you” and waiving his hands with huge eyes and a wide smile on his face! The first song they sang is from the new cd, and Evan said “Mom, that’s the song I play on my cd player in my room at night”.  Then they played “Beautiful Day” and Evan could not contain his happiness any longer. He sang all of the words, and threw his hands into the air just like everyone else in the crowd. I guess I shouldn’t have worried about him not having a great time!

I watched Evan enjoy his favorite band, sometimes watching him more than the show on the stage. When they played the song “I’ll Go Crazy If I Don’t Go Crazy Tonight”, they changed it to a dance mix, and Evan was dancing around like he was at a disco. He enjoyed the show just as much as the old people like me who can still remember the first time we heard “Sunday Bloody Sunday” or “Pride.”

Evan kept looking up into the sky at the lights from the stage that were shooting beams of lights into the clouds. He looked at me and asked, “Mommy, is that heaven?” I didn’t know what he was talking about, so I said, “Where, up in the sky?” and Evan said, “No, everywhere here?” I didn’t know how to answer such a question, and I was a little choked up by it. I said, “Well, maybe it is to some people.” Evan replied, “Yeah, that’s what I thought!” I told my husband, Sam, what Evan had said and he just shook his head with a smile on his face and said “That Evan!”

So, when you ask Evan how he liked seeing Bono or how he liked the U2 concert, he’ll probably just say “it was good,” but don’t be fooled. He LOVED it!! Just before the show ended, as he was standing on my chair, leaning into my back so he didn’t fall while he was dancing, Evan put his arms around my neck and said “Mommy, I LOVE this concert! Thank you for bringing me to see Bono!”

It was completely worth the expensive tickets to hear those words, spoken so clearly into my ear, by a boy who not so long ago couldn’t talk, but could always sing the songs that he loved by his favorite band!

Evan dressed as Bono on Halloween

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – An Aspie’s Dream

September 18, 2010 6 comments

This “In Their Own Words,” is written by Aaron Likens from St. Louis, Mo. Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome.” To find out more, check out his blog here.

I want everyone to know that for the most part, I am happy. It is my dream that people learn this. I may have some challenges, but I am not defective. I don’t deserve or need your pity and am happy being me.

There are times when the world tries to get me to fit in, and sometimes I try, but there are other times when a social situation may be too much for me. I have had situations in the past where I have been called weird or odd for trying not to fit in. It is my dream that the world begins to not only know about us on the autism spectrum, but begins to understand us.

We have a lot to learn from each other. I look at, sometimes completely perplexed, how two random people can have a conversation. I know others look at me, completely perplexed, when I get excited about a random fact that I recall about auto racing, or when I have the ability to learn some new obscure facts. It is my dream that the world comes to realize that socializing can be difficult the same way it would be for you to recall minute details from the 1992 Indianapolis 500. We are the same, but different.

It is my dream that I never have to apologize to again. This can only come from understanding. Being on the spectrum isn’t something to look down upon! Yes, it has its challenges, but it has its blessings. Each person is unique. Let’s cherish the uniqueness and not look down upon it. In my mind an apology like this is reserved for something really horrible, and I don’t see it that way. I hope, and dream that, eventually, all will see this.

I dream what everyone else dreams about. I want to have a full, productive life. I want a family, a career, and the ability to live my life to the fullest. Some people seem to think that an autism label is the end and that to dream such things is a waste of time. No dream and no person is a waste of time. Yes, we may need to work harder at some things, but if we’re not given a chance then how can we succeed? There is so much potential in a mind on the spectrum, but if not given the chance how can one dream of the things that I dream about?

Finally, my biggest dream is a day where the word autism doesn’t draw a repulsive reaction for those who aren’t affected by it. Autism has to be one of the most misunderstood conditions, but understanding is coming. I haven’t had to debate someone on what autism is for quite some time. When I say “asperger” people don’t think of a food item or Olympic venue (sad, but true!). Everything in this world started as a dream, and my dream was already started by countless of people before me and I hope I can do my part in fulfilling it. I know I am not alone in my dream. All of us can do some part in educating some one; whether it is a school, politician, or a random person in a grocery store. I feel the world is listening and is open to learning about us. In all reality there isn’t that much that separates us; we’re all people, we all have dreams, and for us on the spectrum we just have different traits. We have feelings, we can be scared, and most of all we just want to be understood. This is my dream.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

National Suicide Prevention Week

September 7, 2010 2 comments

People with autism spectrum disorders such as autism and Asperger Syndrome can be prone to depression, which may lead to a risk of suicide in some cases. These developmental disorders have a lasting change in a person’s thinking, how they react to certain situations, their work and how they relate to others. People with Asperger’s or autism may face increased stress, greater difficulty with relationships, difficulty managing their own emotions, and often fewer skills for dealing with these problems. Without appropriate support they may find themselves feeling isolated and helpless.

It is important to realize that because of these and other factors, autistic teenagers and adults might experience feelings of depression and may be at greater risk of suicide. For people who think about ending their lives, suicide may represent an answer to what they feel is an otherwise unsolvable problem. The choice may appear preferable to circumstances such as enduring emotional distress or disorder, which the person may fear more than death.

It is particularly important for family members, friends and those who care about the person to know the danger signs, know ways of being helpful and know who you can turn to for advice or referral.

Source: http://www.autism-help.org/family-suicide-depression-autism.htm

September 5-11 is National Suicide Prevention Week. Although it is very important for all people to focus on their mental health and well-being, it is particularly important for the caretakers of those who have autism. Autism and Asperger’s Syndrome can affect communication abilities, which may complicate seeing the cues of a person in trouble.

Please visit these sites for more information:

Autism-Help.org: http://www.autism-help.org/family-suicide-depression-autism.htm
National Suicide Prevention Lifeline: http://www.suicidepreventionlifeline.org/
To Write Love on Her Arms: http://www.twloha.com/

Need immediate help? In the U.S., call 1-800-273-8255

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