Does My Child Have Asperger's or Childhood Disintegrative Disorder?

“We believe our son has Asperger’s Syndrome and we want to have him tested. What are the symptoms we should be looking for and who should we go to for testing? Also, is it possible that his current symptoms may be reflective of something other than Asperger's, like CDD?"

Ideally, you would take your son to a child and adolescent psychiatrist who specializes in autism spectrum disorders. But these doctors are hard to find. Alternatively, you can have your son’s pediatrician make a referral to a specialist.

Symptoms of Asperger’s and High-Functioning Autism vary from one youngster to the next, but in general, they fall into three areas:
  1. Communication difficulties
  2. Repetitive and stereotyped behaviors
  3. Social impairment

Kids with Asperger’s do not follow typical patterns when developing social and communication skills. Moms and dads are usually the first to notice unusual behaviors in their youngster. Often, certain behaviors become more noticeable when comparing kids of the same age.

In some cases, toddlers with Asperger’s may seem different very early in their development. Even before their first birthday, some babies become overly-focused on certain objects, rarely make eye contact, and fail to engage in typical back-and-forth play and babbling with their mom or dad. Other kids may develop normally until the second or even third year of life, but then start to lose interest in others and become silent, withdrawn, or indifferent to social signals. Loss or reversal of normal development is called regression and occurs in some kids with Asperger’s.

1. Communication Issues—

By the first birthday, typical toddlers can say one or two words, turn when they hear their name, and point when they want a toy. When offered something they do not want, toddlers make it clear with words, gestures, or facial expressions that the answer is "no." For kids with Asperger’s, reaching such milestones may not be so straightforward. For example, some kids with Asperger’s and High-Functioning Autism may:
  • Coo and babble in the first year of life, but then stop doing so
  • Develop language at a delayed pace
  • Fail or be slow to develop gestures (e.g., pointing and showing things to others)
  • Fail or be slow to respond to their name or other verbal attempts to gain their attention
  • Learn to communicate using pictures or their own sign language
  • Repeat words or phrases that they hear, a condition called echolalia
  • Speak only in single words or repeat certain phrases over and over, seeming unable to combine words into meaningful sentences
  • Use words that seem odd, out of place, or have a special meaning known only to those familiar with the youngster's way of communicating

Even kids with Asperger’s who have relatively good language skills often have difficulties with the back and forth of conversations (e.g., because they find it difficult to understand and react to social cues, kids with Asperger’s often talk at length about a favorite subject, but they won't allow anyone else a chance to respond or notice when others react indifferently).

Kids with Asperger’s who have not yet developed meaningful gestures or language may simply scream or grab or otherwise act-out until they are taught better ways to express their needs. As these kids grow up, they can become aware of their difficulty in understanding others and in being understood. This awareness may cause them to become anxious or depressed.

2. Repetitive and Stereotyped Behaviors—

Kids with Asperger’s often have repetitive motions or unusual behaviors. These behaviors may be extreme and very noticeable, or they can be mild and discreet (e.g., some kids may repeatedly flap their arms or walk in specific patterns, while others may subtly move their fingers by their eyes in what looks to be a gesture). These repetitive actions are sometimes called "stereotypy" or "stereotyped behaviors."

Kids with Asperger’s also tend to have overly focused interests. They may become fascinated with moving objects or parts of objects (e.g., wheels on a moving car). They might spend a long time lining up toys in a certain way, rather than playing with them. They may also become very upset if someone accidentally moves one of the toys. Repetitive behavior can also take the form of a persistent, intense preoccupation (e.g., they might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses). Kids with Asperger’s often have great interest in numbers, symbols, or science topics.

While kids with Asperger’s often do best with routine in their daily activities and surroundings, inflexibility may often be extreme and cause serious difficulties. They may insist on eating the same exact meals every day or taking the same exact route to school. A slight change in a specific routine can be extremely upsetting. Some kids may even have emotional outbursts, especially when feeling angry or frustrated or when placed in a new or stimulating environment.

No two kids express exactly the same types and severity of symptoms. In fact, many typically developing kids occasionally display some of the behaviors common to kids with Asperger’s. However, if you notice your youngster has several Asperger’s-related symptoms, have your youngster screened and evaluated by a health professional experienced with this disorder.

3. Social Impairment—

Most kids with Asperger’s have trouble engaging in everyday social interactions. Some kids with Asperger’s may:
  • Do not readily seek to share their enjoyment of toys or activities by pointing or showing things to others
  • Make little eye contact
  • Respond unusually when others show anger, distress, or affection
  • Tend to look and listen less to people in their environment or fail to respond to other people

Recent research suggests that kids with Asperger’s do not respond to emotional cues in human social interactions because they may not pay attention to the social cues that others typically notice. One study found that kids with Asperger’s focus on the mouth of the person speaking to them instead of on the eyes, which is where kids with typical development tend to focus. A related study showed that kids with Asperger’s appear to be drawn to repetitive movements linked to a sound, such as hand-clapping during a game of pat-a-cake. More research is needed to confirm these findings, but such studies suggest that kids with Asperger’s may misread or not notice subtle social cues (e.g., a smile, a wink, a grimace, etc.) that could help them understand social relationships and interactions. For these kids, a question such as, "Can you hold on for just a minute?" always means the same thing, whether the speaker is joking, asking a real question, or issuing a firm request. Without the ability to interpret another person's tone of voice as well as gestures, facial expressions, and other nonverbal communications, kids with Asperger’s may not properly respond.

Likewise, it can be hard for others to understand the body language of kids with Asperger’s. Their facial expressions, movements, and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings either. Many older kids with Asperger’s speak with an unusual tone of voice and may sound sing-song or flat and robot like.

Kids with Asperger’s also may have trouble understanding another person's point of view. For example, by school age, most kids understand that other people have different information, feelings, and goals than they have. Kids with Asperger’s may lack this understanding, leaving them unable to predict or understand other people's actions.

Related Disorders—

Rett syndrome and childhood disintegrative disorder (CDD) are two very rare forms of Autism that include a regression in development. Only 1 of every 10,000 to 22,000 girls has Rett syndrome. Even rarer, only 1 or 2 out of 100,000 kids with Asperger’s have childhood disintegrative disorder.

Unlike other forms of Autism, Rett syndrome mostly affects girls. In general, kids with Rett syndrome develop normally for 6–18 months before regression and Asperger’s-like symptoms begin to appear. Kids with Rett syndrome may also have difficulties with coordination, movement, and speech. Physical, occupational, and speech therapy can help, but no specific treatment for Rett syndrome is available yet.

Scientists have discovered that a mutation in the sequence of a single gene is linked to most cases of Rett syndrome. This discovery may help scientists find ways to slow or stop the progress of the disorder. It may also improve doctors' ability to diagnose and treat kids with Rett syndrome earlier, improving their overall quality of life.

Childhood disintegrative disorder affects very few kids, which makes it hard for researchers to learn about the disease. Symptoms of childhood disintegrative disorder may appear by age 2, but the average age of onset is between age 3 and 4. Until this time, kids with childhood disintegrative disorder usually have age-appropriate communication and social skills. The long period of normal development before regression helps to set childhood disintegrative disorder apart from Rett syndrome. Childhood disintegrative disorder may affect boys more often than girls.

Childhood disintegrative disorder is a condition in which kids develop normally until ages 2 to 4, but then demonstrate a severe loss of social, communication and other skills. Childhood disintegrative disorder is very much like Autism. Both are among the group of disorders known as pervasive developmental disorders (or autism spectrum disorders), and both involve normal development followed by significant loss of language, social, play and motor skills. However, childhood disintegrative disorder typically occurs later than Autism and involves a more dramatic loss of skills. In addition, childhood disintegrative disorder is far less common than Autism.

Kids with childhood disintegrative disorder typically show a dramatic loss of previously acquired skills in two or more of the following areas:
  • Bowel or bladder control, including frequent accidents in a child who was previously toilet-trained
  • Language, including a severe decline in the ability to speak and have a conversation
  • Motor skills, including a dramatic decline in the ability to walk, climb, grasp objects and other movements
  • Play, including a loss of interest in imaginary play and in a variety of games and activities
  • Social skills, including significant difficulty relating to and interacting with others

Loss of developmental milestones may occur abruptly over the course of days to weeks or gradually over an extended period of time.


Anonymous said...

For my son it was trains, to the point where he couldnt talk about much else. Honest dialogue can be difficult, if it helps, theyre often BRILLIANT children, and many lead good healthy lives as adults. :) pass along?

Anonymous said...

For my 7 yo Aspie son, it's weather and geography. He constantly is talking about, reading about or studying one or both of these topics. He is completely consumed by it most days but the upside is that he is learning so much. I'm learning more now just trying to answer his questions than I have learned in all of my years in school/college! He is my little buddy and my inspiration.

Anonymous said...

My 6 year old son was completely obsessed (24-7) with trains too, when he was a bit younger. Thomas the Train. Now that he is older, it's shifting to Mario Bros Nintendo games and vehicle makes and models that he sees while we are driving. He too is a BRILLIANT child, mind blowing sometimes!
Our Pediatrician diagnosed him ADHD/OCD at age 3.5 and left it at that. There was still something missing. Saw a neurologist and all he could do was substantiate the ADHD and just experimented with dosages of his meds. Still something was off. FINALLY, at age 6 we were referred to a child psychiatrist who knew without question, watching his obsessions and mannerisms, that he was indeed an Aspie! He gave us a lengthy questionnaire to complete and our answers to that just supported it. The psychiatrist has made all the difference and he has just EXPLODED into this amazing multifaceted kid! I would suggest a psychiatrist right from the start, but keep your pediatrician in the loop, they may have a good psych to refer you to. But be diligent and explore on your own if your pediatrician is holding you back like ours did. Yes, we have a new pediatrician now because of it all.
Good luck!
about an hour ago

Anonymous said...

Aspergers is a very complex disorder, no child has the exact same symptoms although many have similar ones i.e. a passion for trains, but some may not have that particular symptom so don't let anyone tell you if your child isn't obsessed with something they can't have Aspegers (my eldest does, my youngest doesn't have a particularly all consuming passion but they both have Aspergers). First pick up a good guidebook to Aspergers i.e. Tony Attwoods Complete Guide. Read what typical symptoms are then read examples of how those symptoms display themselves as the medical explanations may seem confusing and may mislead. Write down any examples that relate specifically to your child under each heading. If you fill several pages, ask your GP to refer you to a paediatrician or go straight to a private psychologist. Your child does not have to have every single symptom, and you must absolutely remember just as no child is the same - no child with Aspergers is the same as another.

Anonymous said...

OMG! we are waiting on approval from the state to do testing, we have been thru alot in the last couple of years my son is now 8 and do believe we have reached the right folks, we were lucky enough to get to s Autism Diagnostic Center, great bunch of folks. My son was also dognosed with epilepsy which has thrown a big monkey-wrench in my work career but I wouldn't trade him for anything in this world. Well currently our obessions are Pokemon and his nintebdo DSi which I can barely pry out of his hands, but lately he has been going outside to play after school so I let him. Our bigge challenge is schoolwork. To everyone keep striving for your aspie they are quite brilliant.

Anonymous said...

As far as who to go to for diagnsosis, we saw a pediatric clinical psychologist when our son was 39 months old and showing signs of ASD. At that time he was diagnosed with PDDNOS. At 6 1/2 years old, we saw a developmental pediatrician who gave the Asperger's diagnosis. The first doctor we saw made an educated assumption that our son would ultimately be diagnosed with Asperger's when he got older and she was right. In between these two doctors, we were sent to a pediatric psychiatrist who did not want to help us at all with diagnosis, just wanted to prescribe medication. That was a very bad experience.

Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...