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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

In Their Own Words – The Lake

September 5, 2010 7 comments

This “In Their Own Words” is by Taran Burns, a young man with Asperger Syndrome.

I have Asperger’s Syndrome. I’ve known since I was 16, now I’m 23. My daily life is filled with anxiety, agoraphobia, paranoia, and usually a deep depression that takes a lot of effort to snap out of. When I decide I need a break from the chaos of work and the cacophony of city sounds, being completely crowded and yet so alone, I escape to Wales.

This lake in Wales gives me an instant sense of relief. I am one with the world and completely at peace. The lake connects me to my childhood, nature and a feeling that I am alive. Here, in my own company, I do not feel alone.

This picture was taken by Taran Burns on Christmas Eve, at Mamgi’s lake, Cnwch Coch, Ceredigion, Wales.

“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 – In Opposition to DSM-V

September 4, 2010 104 comments

This “In Their Own Words” is by Hannah Fjeldsted, who has Asperger Syndrome. Hannah, a rising college senior, interned with Autism Speaks when she was in high school. You can learn more about Hannah in her essays, Living with Asperger’s Syndrome (Part 1) and Living with Asperger’s Syndrome (Part 2), which were featured on AutismSpeaks.org.

The American Psychological Association (APA) has recently announced a proposal to do away with the diagnosis of Asperger’s Syndrome in the DSM-V and instead group it with the Autism Spectrum. Under this proposed revision, Asperger’s will no longer be referred to as its current title, but will instead by renamed “high-functioning autism.” As someone with Asperger’s, I am strongly opposed to this proposal and I firmly believe that autism and Asperger’s should continue to be classified separately. This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s, it will cause further confusion and ambiguity in diagnostics, and it will attack the identity in which many Aspies, like me, take pride.

First of all, many Aspies already suffer enough from the negative stigma and stereotypes society holds against them. To call Asperger’s “high-functioning autism” or “a form of autism” will only contribute to this stigma. The label of Asperger’s at least gives observers the impression of intelligence and ability. But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently. Therefore, if people with Asperger’s are merged under the autistic group, brilliantly gifted and capable individuals could be unfairly stereotyped as incapable and unprofitable. Because it is a natural human tendency to stereotype groups of people, society tends to assume that all people with autism and Asperger’s are the same and fails to acknowledge the variations in the spectrums of these conditions. We Aspies are already dangerously stereotyped within our own group and to incorporate us into the autistic group will only generate more inaccurate stereotypes and misunderstandings about us. For example, many people with Asperger’s are not hired for a job or are denied promotion or advancement in an occupation because their employers assume that all people with Asperger’s are incapable of performing the tasks required. They might stereotype all Aspies as being completely inflexible, clinically hypersensitive to the sensory environment, or 100% incapable of getting along with or relating to their coworkers, without realizing that the Asperger’s symptoms vary according to the individual. Imagine how much worse this stereotyping will get when people with Asperger’s are placed under the same category as severely autistic people who never learn to speak, who never learn to independently tie their shoes or brush their teeth, and who need assistance with every aspect of their life. Imagine what other opportunities will be unfairly denied to capable Aspies who are only mildly affected based on the misconceptions society has about autism. The DSM-V proposal will do Aspies a disservice, not a favor because it will only exacerbate the damage that labels do.

Additionally, I also find the DSM-V proposal to be an act of insensitivity toward the adversity people with Asperger’s encounter. I’ve always been annoyed and offended when Asperger’s is referred to as “a mild form of autism,” which is how it will be classified under this suggested revision. Let’s get one thing straight. ASPERGER’S IS NOT MILD! As Tony Altman writes in The OASIS Guide to Asperger’s Syndrome, “Asperger Syndrome is a serious, lifelong disability that requires individualized expert intervention and should be treated as such. There is nothing ‘mild’ about the challenge people with AS face” (27). “You may have heard Asperger Syndrome described as mild autism, but as one mother aptly put it, ‘My son doesn’t have mild anything.'” Although we Aspies might have gifts and talents that severe Autistics don’t, that does not mean that our struggles aren’t real. In spite of our outstanding cognitive abilities, many Aspies have difficulty making friends, become lonely and isolated, and might even suffer from depression and anxiety. Many Aspies also struggle to find and keep jobs or live on their own, and face rejection and exclusion in an unjust society that puts too much emphasis on social skills. I have been able to overcome many of my social difficulties, dramatically improve my interpersonal relationships, and live a normal, prosperous life thus far. But, that progress did not come without years of hardship, exhausting work, blood, sweat, and tears. I had to get a lot of therapy to get to where I am now. The adversity associated with Asperger’s is indeed genuine and real and the APA needs to be more sensitive and considerate toward that adversity. Asperger’s should continue to be classified separately from autism because we Aspies have our own unique trials and tribulations that we work hard to overcome. Let us not pretend that Asperger’s is “easy” by calling it “mild autism,” “high-functioning autism,” and so forth.

I also believe that Asperger’s should remain separate from autism because a separate diagnosis is more logically accurate in my opinion. I don’t believe Asperger’s should be incorporated into the autism spectrum, but should be its own spectrum. In the DSM, Asperger’s shouldn’t be considered “on the autism spectrum,” but should simply be called “the Asperger’s spectrum.” Even Asperger’s alone can vary from mild to severe; In that manner, it really does have its own spectrum. As Karen Siff Exkorn wrote in The Autism Sourcebook, “Asperger’s is sometimes mistakenly referred to as high-functioning autism because children with this diagnosis tend to have average or above-average intelligence and typical or advanced language skills. But, in reality, Asperger’s is not high-functioning autism. The difference between a diagnosis of Asperger’s and high-functioning autistic disorder lies in the realm of communication. Because children with Asperger’s develop communication skills within the typical range for the first few years of life, they usually present strong verbal skills, which is not a component of Autistic Disorder” (21). Therefore, Asperger’s should be classified as its own spectrum of diverse and variable individuals with strong intelligence and verbal skills because strong verbal skills are a truly significant characteristic that distinguishes Aspies from autistics. I don’t think it makes sense or does any good to put a strongly verbal Aspie with an advanced vocabulary in the same category as autism when some autistics never learn to speak.

I also believe that the DSM-V proposal will make diagnostics more ambiguous. If we incorporate Asperger’s into the autism spectrum, the spectrum will only get wider and it will be more difficult to assess the severity of this disorder in its future victims. Some supporters of this proposal have argued that it’s more productive to eliminate more labels and divisions, but I believe the contrary is true. I like it when there are more specific labels and divisions in diagnostics because it increases specificity, clarity, and simplicity and I believe that future parents of autistic or Aspie children will benefit from this specificity. If Aspie children are only diagnosed as “autistic” and are no longer given a separate label, that title will raise more questions like, “What form of autism does this person have,” “How severe is it,” “What are the extent of the symptoms,” etc., The generality of the autism label will give parents less guidance about the proper interventions to take for their child’s best interest. The spectrum will become so ridiculously wide that the parents won’t even know where to begin helping their child. But, a title of Asperger’s is much more specific and raises fewer questions. A separate diagnosis of Asperger’s will give future parents a much better idea of which direction to take to meet their child’s specific needs. The more divisions we have in diagnostics, the less ambiguity we have and the more precision there is. Greater precision and clarity yields greater accuracy, efficiency, and productivity.

The most personal reason I am against this DSM-V proposal is that I consider it to be an attack on my identity and I’m not the only Aspie who believes this. Asperger’s is indeed part of who I am and I have grown to become proud of that title. I take great pride in my positive aspects of Asperger’s, like intelligence, memory, and vocabulary, and I do not want those gifts to be overshadowed by merging them into a title that is perceived to be more negative. Besides, many respectable and inspirational figures, like Albert Einstein, Wolfgang Mozart, Marie Curie, Thomas Jefferson, and so forth are believed to have had Asperger’s. Many Aspies, like me, are honored to be associated with such geniuses and it would be a shame indeed to have this sense of pride taken away. We, Aspies, are unique in our own way and not “just more autistics.” I wish the APA would honor this uniqueness we hold dear. I will always refer to myself as someone with Asperger’s, no matter what any individual or organization says. If you’re an Aspie who’s determined to protect your identity or if you’re simply concerned about the ramifications of this proposal, stand with me and oppose DSM-V.

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 – Telling It Like It Is

August 12, 2010 9 comments

This “In Their Own Words” post is written by Jake Davis of Omaha, Neb. He is a single father of three children, one who has autism.

I’m a 31-year-old divorced father of three children, who I have full custody of: my boy Ian (9) and his sisters Sienna (8) and Ashlyn (6). I’ve had them on my own since 2005. Yes, it was trying in the beginning, but new soon becomes normal and normal becomes manageable.

My son, Ian, is an Aspie (has Asperger Syndrome) and he also has elements of Semantic-Pragmatic Disorder. Most people reading this will have a fair idea of what this entails, and for those of you who don’t, I’ll put it in a nutshell. Ian has an amazing imagination, almost superhuman technical recall, and he’s very blunt and matter-of-fact in his conversations. His imagination leads him to very interesting solutions or observations from time to time.

I love the way Ian’s thought process works. No boundaries, no form, no restrictions. Just a little boy’s logic, voiced the moment he thinks it.

The way he works is normal to me. I forget that it can sometimes be jarring or unusual to others. I try to work with him and explain the ins and outs of social interactions and the right time and place for things. He uses his experiences to dictate how he should respond in a situation he’s encountered before, sometimes it works, and sometimes it doesn’t. Then, there are those rare moments when you get to watch the results of an unexpected situation.

Earlier in 2007 we had moved to the western end of Nebraska from Omaha which had interrupted the every other weekend visitations with their Mom. During the summer we still kept the six week visitation schedule in place, and it was July, so they were out of school and it was time for the kids to go on their vacation.

They knew Mom was coming, and so we packed everything up and waited for her to show up the next day.

Their Mom arrived and we loaded car seats, snacks, their bags and toys for a summer adventure. I hugged and kissed the kids goodbye and as they pulled away, I decided that I had earned a nice long afternoon nap, and I went up stairs, laid down, and fell fast asleep.

I was jarred awake, seemingly only seconds later, by the ring of my cell phone. It was my ex wife.

I didn’t get out more than a groggy “Hello?” before I was hit with “Jake, I’m going to jail!” In my newly awake stupor, I wasn’t connecting all the dots. More explanation was rattled off as my brain was trying to interpret these words with varying degrees of success.

She had been pulled over for drifting onto the shoulder in front of a State Patrolman. I was still failing to understand how driving on the shoulder equals jail.

The unfortunate and embarrassing part is that my ex was behind on her child support payments. It wasn’t (and isn’t) much money at $150 a month. I don’t really need it, and when I did get it, I’d treat the kids to dinner and a movie, or a toy, or some new item of clothing they’d see while we were out shopping. She had some trouble keeping a job and a place to live. So I didn’t worry about the money (and they were going to their Grandma’s for the summer, so I wasn’t worried about lack of a permanent residence). The state however, did worry about it, and unbeknownst to me, had issued an arrest warrant for non-payment of child support. And they suspended her license.

After I had time to process the statement and the reason, I got dressed as fast as I could and drove the 40 miles away to where the Patrolman was waiting with the kids and their Mom. The Trooper had waited for me because he didn’t want to call child services and didn’t want to put their Mom into cuffs in view of the kids.

I arrived and quickly I loaded the kids stuff into my car (everything I had loaded into hers about an hour prior), and the kids hugged her goodbye and said they’d see her later.

On the way back to the car Ian says “Dad, we gotta bust her out!”

I stifle both a feeling of panic and laughter, responding with the tersest whisper I can manage, “Ian, be quiet! Get in the car!”

Undeterred by my attempt at handling the situation Ian pipes up even louder “Maybe we can bake her a cake with a file in it!” Again, fighting laughter, I whisper, “IAN! GET IN THE CAR NOW!” while quickly ushering him into the vehicle.

From what their Mom said, the Trooper had heard everything and thought it was pretty funny and had wondered aloud what cartoons Ian had been watching.

Fast forward three years later, their Mom got caught up on her child support, has regular work and is due to be married next summer. Ian still quite plainly tells it like it is, and I’ve been laughing the whole way.

“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.

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