I guess she is just depressed because her overbearing sister steals all of the attention. That’s why she doesn’t smile, run, play and laugh like a normal toddler. If I plan to home-school this child I have got to figure out why she hates to practice her ABCs and manuscript. She doesn’t care if she gets a sticker or not. I know she knows how to do it; she is just refusing. Her head is down in her arms on the table. Is it really possible for a 3-year-old to be this stubborn? She won’t even come out for a cookie!
My mom used to get motion sickness; maybe that’s why my daughter gets sick every time we get in the car. But why does she spin herself in circles in the backyard for what seems to be hours at a time without even getting dizzy? That just doesn’t make sense. It is strangely funny and weird that she likes to throw herself backwards on the floor over and over and over again as her father and I sit and watch completely bewildered and entertained at the same time. What two-year-old does that?
“I did. I asked the doctor again. She said it’s just her personality,” I tell her father.
Why won’t she get dressed? There is no reason for her to be so difficult about getting dressed. Just put on the jeans and shirt with the cute little design and let’s go already! I am going to be late to work again! She’s four years old. Her sister has been dressing herself and changing numerous times a day, much to my dismay, on her own since she was at least two. What is the problem? This child doesn’t seem to want to wear anything except pajamas or sweat suits. She can’t wear sweat suits everyday.
How did she get that math problem? She’s not even in school yet. Was she even listening to us? She was in the other room. She just blurted out the answer like it was nothing to her.
Why is she overreacting? I am just brushing her hair. I am being so gentle. It would look so cute if she would just let me put this pony tail in.
I read an article on autism. Eva doesn’t have autism. It is an interesting subject though. I’ll read it and think that thankfully my child does not have autism!
Okay, she’s five. It’s time to learn to ride a bike. Oh my goodness, she’s going to hurt herself if I let go. Why can’t she get this?
Look both ways when crossing the street. Hold my hand when we walk in the parking lot. You have to watch where you are going. Stay close to me. Be aware of your surroundings. Don’t wander in the store. Now I understand why parents have leashes for their kids. I have to physically have a hold on my child or she will disappear. Don’t talk to strangers. Yes, the store clerk is still a stranger. Please don’t tell everyone we meet such personal family information. It is a good thing I don’t get embarrassed easily. Just smile, take her hand so you don’t lose her and walk away.
Big girls take showers, not baths. What is the problem? Why is she crying? Outright refusal. It has been twenty minutes and she still hasn’t turned the shower on. I don’t even take that long of a shower. It has been an hour since she got in. Okay, she’s finally done. Did you wash your hair? It’s not even wet. What were you doing in there for an hour? Okay, you have to get back in. More crying. I will come in with you and wash your hair for you.
I justify my actions. “I do not spoil her! How outrageous! No, I don’t make excuses for her!” I know, although I can’t understand it, she cannot do it by herself. So I do it for her.
Back to the doctors. It’s a different doctor and this time, I insist. “There is something wrong. She is seven. She cannot ride a bike. She would trip over a blade of grass. She’s awkward.” She has my compliant daughter do a few minor gross motor activities and tells me she is not where she thinks she should be and sends us to a physical therapist that does some more in-depth testing with her and finalizes that she has Sensory Processing Disorder. Phew! That explains it! That’s why she won’t wear jeans. That’s why she hates showers. That’s why she begs for back rubs. That’s why she falls so much. Eva spends a year in physical and occupational therapy. I notice most of the other children in therapy definitely have autism, yet I brush off the thought once again.
Two years later we are doing homework. I’m sitting right next to her, keeping her on track the whole way and trying to be patient. I am explaining everything in a way she can understand.
“Wow! Did she just re-write that entire paragraph word for word after only reading it once? I can’t do that. I’m going to Google that.” And so I do because I am so intrigued. Every site it takes me to mentions autism.
At the age of nine, I take her to see a neurologist. I am convinced there is more to my child’s strange and intermittent brilliance, odd ways and sensory issues. How can I understand her? How can I help her, and how can I have a relationship with my child if I don’t know what is going on inside that mind of hers? After a few checklists and hour-long sessions of questions regarding Eva’s social interaction and behavior and we have a diagnosis! Asperger’s Syndrome. Tears form, but they are tears of relief. The relief of finally knowing.
For nine years, her father has insisted that something was just not right. When he suggested autism to me a few years back I told him I was on top of it. She had sensory issues, but I knew. My gut and my instincts told me daily that she just was not “normal.” I wanted to believe her doctor. It is just her carefree personality. So she’s different? She’s just innocent and naïve. That can be a good thing, right?
When I called her father to tell him about the diagnosis, he responded, “I told you. No one ever listens to me. She is to stay in a normal classroom. She is not stupid. I think she’s a genius. Do you hear me? Don’t let them dump her off.” I promise him that I won’t. I read every piece of information I can find on Asperger’s Syndrome and high functioning autism and I am convinced he knew because he had it, too.
My daughter is now going to be 11 years old. She is possibly the coolest person I know. She attends a regular school, is in a regular classroom and is on the honor roll. Her teachers, therapists and IEP team are extremely cooperative and proactive. She is in several social skills groups and she takes showers now. She has friends, attends sleepovers and although not gracefully, she rides a bike, dances and roller skates. She makes us laugh and makes us wonder. She thinks life is a bowl of cherries. She doesn’t sweat the small stuff. She is patient, faithful and so forgiving. She is forgiving of the world for not always understanding and not always being so kind. Forgiving of my ignorance at what she is talking about sometimes. Forgiving of the ever-confusing way us atypicals go about things. Eva continues to be kind though, to everyone she meets. She is incapable of being mean or malicious or untrue.
“All you need is love, mom” were the words of my three-year-old-Beatles-fan daughter who has Asperger’s Syndrome.
This “In Their Own Words” essay is written by Launa M. Taylor of Willoughby, Ohio.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.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.
Today the American Psychiatric Association announced plans to change autism diagnostic categories in the newest version of the Diagnostic and Statistical Manual (DSM). Notably, it has been proposed that the diagnoses of Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) be removed from the manual. A broad category of Autism Spectrum Disorder has been proposed instead.
These proposed changes are certain to be met with a wide range of reactions, and such reactions will depend on one’s perspective. From the scientific perspective, research conducted over the past decade has shown that there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS. For example, research has shown that these subtypes are not linked to specific etiologies (causes) or specific treatment recommendations. Studies have shown that autism and Asperger syndrome can show up in the same familes and that specific autism risk genes don’t aggregate neatly within diagnostic categories. Treatment recommendations for Asperger syndrome versus high-functioning autism or for autism versus PDD-NOS are not different. So, from a scientific point of view, the changes in the DSM make sense. The new classification system recognizes that autism is a spectrum disorder that varies quantitatively in symptom severity and expression. The changes will allow us to look at the the landscape of autism broadly and focus on clusters of symptoms and seek etiological commonalities in disrupted signaling pathways that promise to tell us more than we have learned from considering each diagnostic category separately.
People in the community living with autism spectrum disorders may have a very different viewpoint, however. For some individuals who have been diagnosed with Asperger syndrome or other subtypes of the ASD spectrum, the change in the DSM will be very disruptive and distressing. Many individuals personally identify with the diagnostic label they have been given and grown up with. They may participate in support or advocacy groups that identify with a specific label, for example “Aspies”. Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM. And there is nothing wrong with this. In fact, there is precedent for this. For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM.
One potential positive impact of the proposed changes to the DSM is that they may help increase access to services to those individuals with Asperger syndrome and PDD-NOS who previously were denied access to autism-related services. From the perspective of a parent who is struggling with their young or adult child’s symptoms, it hardly matters what name is given to the collection of their symptoms. Increased access to services can help ease the burden of symptoms for those struggling to manage them.
We need to be respectful and compassionate about what a diagnostic change might mean for individuals with ASD and their families. We invite you use this space to share your thoughts about this change and what it means to your family. We will be listening and look forward to hearing your perspective.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our fifth item is Diagnosis at 14 Months.
In a study in the Archives of General Psychiatry, researchers from the Kennedy Krieger Institute in Baltimore, Maryland found that autism can be diagnosed at close to one year of age, which is the earliest the disorder has ever been diagnosed. The study, which evaluated social and communication development in autism spectrum disorders (ASD) from 14 to 36 months of age, revealed that approximately half of all children with autism can be diagnosed around the first birthday. The remaining half will be diagnosed later, and their development may unfold very differently than children whose ASD is diagnosable around the first birthday. Early diagnosis of the disorder allows for early intervention, which can make a major difference in helping children with autism reach their full potential
Researchers examined social and communication development in infants at high and low risk for ASD starting at 14 months of age and ending at 30 or 36 months. Half of the children with a final diagnosis of ASD made at 30 or 36 months of age had been diagnosed with the disorder at 14 months, and the other half were diagnosed after 14 months. Through repeated observation and the use of standardized tests of development, researchers identified, for the first time, disruptions in social, communication and play development that were indicative of ASD in 14-month olds. Multiple signs indicating these developmental disruptions appear simultaneously in children with the disorder.
The current study reveals that autism often involves a progression, with the disorder claiming or presenting itself between 14 and 24 months of age. Some children with only mild delays at 14 months of age could go on to be diagnosed with ASD. The researchers observed distinct differences in the developmental paths, or trajectories, of children with early versus later diagnosis of ASD. While some children developed very slowly and displayed social and communication abnormalities associated with ASD at 14 months of age, others showed only mild delays with a gradual onset of autism symptoms, culminating in the diagnosis of ASD by 36 months.
If parents suspect something is wrong with their child’s development, or that their child is losing skills during their first few years of life, they should talk to their pediatrician or another developmental expert. This and other autism studies suggest that the “wait and see” method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention during this time period.
To read the complete story, including the signs of developmental disruptions for which parents and pediatricians should be watching, please click here http://www.autismspeaks.org/inthenews/landa_study.php.
Update since this story was run: Members of the Baby Siblings Research Consortium, a collaboration between Autism Speaks and the National Institute of Child Health and Human Development, have now published multiple scientific studies demonstrating that early signs of autism can reliably be seen as early as 12-14 months of age. This improved understanding of the early signs and symptoms of autism has permitted development of new measurement tools to both quantify and diagnose autism symptoms earlier than ever before. For example, the Autism Observational Scale for Infants or AOSI was published by Autism Speaks’ grantees in 2008 and is currently a part of many protocols involving early autism diagnosis and intervention. It has been shown to accurately detect autism as early as 12 months of age. In addition, a modification of the ADOS, called the ADOS-t, was released in 2008 to enhance the clinical diagnosis of autism, indicating a range of concern for children as young as 12 months of age. Both tools are huge advances in the field of diagnosis, allowing for reliable early detection and placement in appropriate intervention services.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our first item, New AAP Policy and Guidelines, is from Autism Speaks’ Top 10 Autism Research Events of 2007.
After years of parents urging for earlier diagnosis and better treatments, the American Academy of Pediatrics (AAP) issued two new clinical reports in October 2007 that will help pediatricians recognize autism spectrum disorders (ASDs) earlier and guide families to effective interventions.
The first report provides detailed information on signs and symptoms so that pediatricians can recognize and assess ASDs in their patients. More specifically, the report introduces universal screening, which means pediatricians must now conduct formal ASD screening on all children at 18 and 24 months regardless of whether there are any concerns. The second report reviews educational strategies and associated therapies, which are the cornerstones of treatment for ASDs, and confirms that early intervention is crucial for effective treatment. The report states that a child diagnosed with autism should be actively engaged in intensive intervention at least 25 hours per week, 12 months per year, with a low student-to-teacher ratio allowing for sufficient one-on-one time. The report further states the importance for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced treatment information.
The new guidelines will hopefully assure that at-risk children are finally appropriately referred without further delay. Both reports are part of a new AAP toolkit for pediatricians “AUTISM: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians,” which includes screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts.
Update since this story was first run: To respond to the AAP recommendations for evaluation by primary care providers of 18 and 24 months olds with suspected ASDs, in 2009 members of Autism Speaks’ High Risk Baby Siblings Research Consortium (BSRC) published an article in Pediatrics outlining several early signs of autism that physicians and other health care providers should be aware of. The paper also identifies potential screening tools that may be used to detect early behavioral indicators. Importantly, the authors address the challenges that primary care providers face in communicating the meaning of these early signs and symptoms.
A big part of why we created this blog was to give a voice to our volunteers, staff and those affected by autism. Shannon’s poem is our first guest blog post and a timely one at that.
Shannon is the mom to three boys and Jack (8.5) has autism. She is also the Connecticut Advocacy chair, and the Greater Hartford Walk Now for Autism Speaks Chair.
“He was diagnosed 6 years ago today and my heart was very heavy all day yesterday thinking about it because 6 years later not much has changed. The numbers are higher and the people in positions to aggressively put and end to autism are still qualifying it’s existence.”
Here is Shannon’s adaptation of the classic Christmas poem:
(Shannon refers to the day Jack received his Diagnosis as D-Day.)
‘Twas the night before D-Day, and all through the house
Not a creature was stirring, well except for the mouse
The stockings were hung by the chimney with care
With hope that they wouldn’t be thrown through the air
All but one of the children, nestled all snug in their beds
Weighted blankets and melatonin could not calm his head
And mamma in her fleece, dad wearing his cap
They knew they would be awake for a while, no chance of a nap
When upstairs in Jack’s room, there arose such a clatter
Mom and dad flew up the stairs to see what was the matter
Up the staircase they flew like a flash
Passed crayon on the wall, and piles of trash
And there in Jack’s room, wouldn’t you know
A fractured alarm clock, he was upset by its glow
And what to our wondering eyes should appear,
The emptied bookcase on the floor, he wanted it there
With a cry of frustration, so piercing and shrill
Mom and dad heard the echo of others saying “can’t you just give him a pill?”
More rapid than eagles his tears they came
And he screamed, and howled and called us cruel names
“I’m leaving! I hate you! I’m running away”
Everyone hates me! I’m a loser, they say!”
To the end of the street! To the end of the block!
The screaming and yelling, it made the house rock.
So, into our arms, we hugged our boy close
Hoping we had the right sensory dose
And then, in a twinkling, we heard through our tears
“I’d like some water and to watch Sponge Bob downstairs”
As we drew in our breath, and were calming our hearts
We muttered, and cursed these Aspergerian parts
They were confusing, irrational, scary and quick
This disorder called autism, we had not picked.
A bundle of baby boy with whom we’d been blessed
Now 1 in 70 of autism’s unwelcome guests
His eyes how they twinkled! – his dimples how merry!
His cheeks were like roses, his nose like a cherry!
And the cleft of his chin was as perfect as gold
We would love this sweet boy, until we were old
Now the stump of a chewstick, he held tight in his teeth
Perseverating and stimming at the tinsel on the wreath
He had a round face, and a little round belly
Would only eat peanut butter and jelly.
He was inappropriate and goofy a right jolly old elf
And I laughed when he said things, in spite of myself;
A blink of his eye, a smirk on his lips
A shimmy, a swagger a shake of the hips
He did not always have words, but wanted to work
On painting, and reading and some other fun quirks,
Sometimes he’d put his finger inside of his nose,
Look to us for a nod, and we’d shake our heads “no!”
He jumps up and down, in his joy shrieks a whistle,
And he laughs, and he laughs, with not so much as a bristle.
And we’ve heard him exclaim, more often than not
“My name is Jack and I can do the Robot!”
- Shannon, Conn.
Do you have a story you want to tell or want to write a guest blog post for Autism Speaks? Leave a comment and we’ll get back to you as soon as possible.