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How should I explain Aspergers Syndrome to my 12-year-old son who was recently diagnosed with the disorder?

Question

How should I explain Aspergers Syndrome to my 12-year-old son who was recently diagnosed with  the disorder?

Answer

More than likely, there is little need to explain Aspergers (high functioning autism) to your child. If you read accounts by others with Aspergers, they usually say that they knew they were different long before they knew they had an official diagnosis. Most report being relieved to learn about their diagnosis because it explained so much about the differences.

Some moms and dads choose to explain Aspergers as soon as the diagnosis is received, keeping the kid involved from the start. Even though the youngster may not be able to comprehend the full definition, there is that feeling of being different. Other parents choose to explain Aspergers much later, after the kid has grown and is able to understand exactly what it means. Either way is acceptable, depending on how you wish to do things in your home.

When it comes time to explain Aspergers to a child with the disorder, be mindful that he may become overwhelmed or even angry when he learns that his differences have a name, and that name is part of the Autism spectrum.

Here are a few suggestions to help you explain the diagnosis:
  • Explain Aspergers as a difference in manner of thinking versus a true disability. While it is true that some people with Aspergers qualify for government disability services, there are so many positives within the diagnosis on which you can choose to focus.
  • Be prepared to list the characteristics of Aspergers. Some of these characteristics are definitely strengths. Aspergers is definitely not all negative!
  • Autism is a spectrum disorder and Aspergers is on the higher end of ability. Most children will know someone at school who has classic Autism and may become distraught over the idea that they share that condition. Make special note of the specific differences.

After you explain Aspergers to your child, you should be prepared for any questions and concerns he may have. Encourage him to talk to you about his feelings. Books, websites, and other publications are available to help you through this process.

My Aspergers Child: Preventing Meltdowns

The Warning Signs of Aspergers

Moms and dads should ask their youngster’s doctor for referral to a developmental pediatrician for assessment if there are concerns with any of the following...

Communication Red Flags:
  • Loss of any language or social skills at any age
  • No babbling by 11 months of age
  • No response when name is called, causing concern about hearing
  • No simple gestures by 12 months (e.g., waving bye-bye)
  • No single words by 16 months
  • No two-word phrases by 24 months (noun + verb – e.g., “baby sleeping”)

Behavioral Red Flags:
  • Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted)
  • Lacks interest in toys, or plays with them in an unusual way (e.g., lining up, spinning, opening/closing parts rather than using the toy as a whole)
  • Odd or repetitive ways of moving fingers or hand
  • Oversensitive to certain textures, sounds or lights
  • Preoccupations with unusual interests, such as light switches, doors, fans, wheels
  • Unusual fears

Social Red Flags:
  • Avoids or ignores other children when they approach
  • Does not play peek-a-boo
  • Doesn’t make attempts to get parent’s attention; doesn’t follow/look when someone is pointing at something
  • Doesn’t point to show things he/she is interested in
  • Doesn’t respond to parent’s attempts to play, even if relaxed
  • More interested in looking at objects than at people’s faces
  • Prefers to play alone
  • Rarely makes eye contact when interacting with people
  • Rarely smiles socially
  • Seems to be “in his/her own world”

Are you wondering whether or not your pre-school aged youngster has Aspergers (high-functioning autism)? Take this simple little quiz:
  1. Are they attracted to shows like Wheel of Fortune or Jeopardy?
  2. Are they fascinated with numbers and letters?
  3. Do they lack the ability to play "with" other children interactively?
  4. Do they like to line objects up in rows?
  5. Do they like to watch the same movie over and over again?
  6. Do they seem unafraid of things that they should be afraid of?
  7. Do they shun away from being touched or arch their back when held?
  8. Do they spin objects around and around?
  9. Do they walk up or down stairs always leading with the same foot?
  10. Is it hard for them to make eye contact or they simply don't?
  11. Is their speech repetitive, like an echo?

If you notice some or multiple signs in your child, write them down. Your concerns and observations are of great value for your pediatrician or professionals who are trying to diagnose your child.

Is it ADHD or Aspergers?

1. Discuss your concerns with your youngster's teacher. Kids who have ADHD and Aspergers often act very differently at school than they do at home due to over stimulation. Your youngster's teacher can offer important information that can lead to a proper diagnosis.

2. Notice if the youngster can stay focused under certain circumstances. Kids with Aspergers can sit still for long periods of time if they are interested in something. For example, they can still to watch a movie they are interested in or stay focused on a computer activity they enjoy. Kids who have ADHD will have trouble focusing on an activity even if they are interested in it.

3. Observe your youngster's behavior. Is your youngster's erratic behavior an everyday thing or is it in response to a traumatic event? All kids are hyper sometimes but a divorce or the death of a family member can cause kids to act out. Generally, if the behavior lasts for more than six months, it may be due to a disorder.

4. See how the youngster responds to medications and other behavior modification treatments. There are a number of medications to treat kids who are hyper active. But generally, you can find a medication to help calm a youngster who has ADHD. Kids who have Aspergers will not be calmed by medications such as Ritalin and Adderall. This is a big red flag since nearly every youngster who is diagnosed with Aspergers is initially diagnosed with ADHD.

5. Understand the differences between ADHD and Aspergers. Kids who have Aspergers typically engage in repetitive behavior, have a hard time dealing with change and are so inner-focused that they may appear to be self absorbed. Kids who have ADHD have a hard time focusing and sitting still but tend to be more aware of their surroundings than kids with Aspergers.

The Aspergers Comprehensive Handbook

Girls with Aspergers and HFA

More often identified in males than females, Aspergers and High-Functioning Autism (HFA) are characterized by compulsive pursuits, awkward communication skills, and problems with social cues.

The signs and symptoms of the disorder in females are often exhibited in a more subtle manner, which leads to missed or incorrect professional diagnoses, a lack of access to special education services and provisions in education, along with an increased potential for interpersonal and psychological difficulties in the adult years.

A number of unique differences exist regarding the ways that young ladies versus males with Aspergers behave:

  • Females that have Aspergers and HFA aren't usually aggressive once they get irritated; instead, they tend to be withdrawn and may very easily "fly under the radar" in classrooms and other interpersonal situations. 
  • Females with the disorder can communicate their feelings in a more calm way than their male counterparts. 
  • Aspergers and HFA females tend to be safeguarded and nurtured by their neurotypical friends, who assist them to deal with challenging interpersonal situations. Acceptance from friends can occasionally cover up the problems these girls have so they aren't recognized by educators and moms and dads. Consequently, grown-ups are not as likely to suggest psychological and social evaluations.

There are specific personality characteristics and warning signs that moms and dads, educators, and specialists can search for when they believe that a young female may have Aspergers or HFA:

  • Females with the disorder often exhibit compulsive traits regarding animals, dolls, and other female-oriented pursuits. While neurotypical females will play with dolls by pretending that they're interacting socially, Aspergers and HFA females might collect dolls and never use them to interact socially with other females. 
  • Their passion for certain subject matter can result in them lagging behind their friends in terms of maturation and age-appropriate conduct (e.g., a pre-teen on the autism spectrum may be captivated by stuffed animals or cartoons long after other females their age have outgrown this stuff.
  • Females that have Aspergers and HFA may be incorrectly assumed to possess a character disorder simply because they imitate typical kids - but use phrases inappropriately. 
  • They are usually bored with kids their age and possess problems empathizing with their friends' concerns/problems. 

While their behaviors tend to be less aggressive than males on the spectrum, grown-ups who pay close attention to females with social and psychological delays can make sure that correct diagnosis and therapy will take place. The younger a female is when she starts to receive the appropriate speech, occupational, and psychological services, the greater likelihood she'll have a completely independent and functional adult life.

Females with Aspergers and HFA have the same difficulties with sensory processing and social navigation as males. In addition, they have telltale intense focus on a particular subject of interest.

Symptoms include:

Routine—
o Appears anxious when there are changes in routine
o Intense focus on a particular subject
o Practices rituals that appear to have no function
o Resists change

Physical—
o Difficulty coordinating movements
o Odd posturing
o Repetitive movements (stims)

Sensory processing—
o Dislikes textures in foods, clothes or objects
o No response or extreme response to noises
o Resists activities that involve movement (slides, escalators…)
o Seeks out sensory experiences (spinning, rocking…)
o Strong aversion to certain smells

Social difficulties—
o "Scripts" daily conversations
o Appears excessively shy
o Appears uncomfortable during conversation
o Avoids interacting with others
o Hesitant to make the first move
o Tends to "blend" into the crowd
o Tends to mimic rather than providing natural responses

It's not uncommon for females with Aspergers and HFA to go undiagnosed well into adulthood. Like heart disease, autism spectrum disorders are 10 times more prevalent in boys, so doctors often don't think to look for it in girls. But some experts have begun to suspect that unlike heart disease, the disorder manifests differently - and less obviously in females - which is also causing them to slip through the diagnostic cracks.

This gender gap may have implications for the health and well-being of females on the spectrum, and some specialists predict that as we diagnose more females, the profile of the disorder as a whole will change. Unlike males, females with ASpergers and HFA seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others despite their social impairment.


More resources for parents of children and teens with Asperger's and High-Functioning Autism:



Comments:

Anonymous said... Dear Dr. Mark, I am speaking at a retreat Aug 4 on the female perspective of AS. I am co-founder of Asperfemme, a support group for self- and officially-diagnosed women with ASD in Ottawa, Canada. I was 48 when I was diagnosed, three years after my two-decade long married ended, and have splinter skills in music (absolute pitch) and language (hyperlexia) which I have parlayed into self-employment as a private music teacher (after several failed careers.) We older women are struggling with financial needs, broken or troubled relationships, sometimes children on the spectrum, on top of the regular aging stuff. I would be interested if any of your research and writing deals with this largely unexplored group (a subgroup of "the spectrum within the spectrum" as Dr. Kevin Stoddart of Toronto's Redpath Centre calls Asperger's). I do find we women are less rigid about routines, and have fewer self-soothing behaviors (stims) than the men. We also tend to get sad and anxious rather than angry, a fact my marriage counselor could not deal with. I was introduced to you in the article "Children with High-Functioning Autism: 'Gifted' or Hyperlexic" on the My Aspergers Child web site (excellent by the way.) My precocious reading skill was considered cute, and not a sign in 1963 that anything was wrong. I think my parents were relieved that I amused myself with books, because I was quiet and no trouble while they dealt with my two rambunctious younger brothers born 11 months apart. I ended up in a Gifted class for 4 years (Grades 5 to 8) and had few friends, being chosen only for the spelling team. I flew entirely under the radar with my good academic record--a child seen and not heard. Looking back I also had selective mutism, excellent mimicry, apraxia and poor executive function. I firmly believe the piano saved my life, as it gave me an outlet and later a means to communicate. Public performance was very hard, but I learned to develop 'show' and private persona.

CoolMama said... I'm glad to see someone writing about girls/women on the spectrum. Like ADHD, women tend to present differently than boys/men do with regard to "symptoms" or characteristics. For myself, when I got into middle school (junior high back then), I learned about acting. For me, being involved in theater classes allowed me to become someone else, someone who wasn't "weird", who wasn't bullied or teased. I learned about personas, roles, and finally felt like I'd found a group where being a misfit was accepted and even embraced. Some might think being on stage as completely opposite to the social awkwardness inherent to ASD/Asperger's--I disagree. When you act, you aren't yourself, so you have the freedom and confidence to overcome your weaknesses. Plus, most interactions are scripted (I didn't do so well at improv, for example). You memorize your lines, and you learn techniques for portraying emotion. It's pretend play at the highest level. Not only was it a life-saver for me in school, it helped me once I tried to get a professional job. Interviews are all about presenting an image, and presenting an image is about projecting a persona, or playing a role. Other ASD individuals may have difficulty with "feeling like a fraud", and I totally get that--but I chose to look at it as being on stage. The "role" I created was just the best parts of me, the parts I wanted to stand out and be noticed. Theater isn't the solution for every person with ASD...but it is something to consider.

Aspergers Teens and Online Gaming Addiction

For many children and teens, computers offer an escape from difficult social situations along with a partial remedy for the loneliness of Aspergers (High-Functioning Autism).

The PC itself offers a predictable false-companionship, and teens who use computers may also band together in common-interest clubs. Such teens may become involved with PCs to the exclusion of almost every other hobby.

Despite the fact that there's a lot of mayhem on the web, inter-personal contact on the web can provide a "nerdy child" a level of defense against actual face-to-face contact. For example, in chat rooms, body language, facial expression, intonation, pacing, and timing of speech are removed in the interpersonal exchange. In role playing games, the interactions between participants are influenced by guidelines associated with traits the virtual person has accrued throughout play. A young man who's just a geek in class may become a strong and dreaded warrior within an online fantasy game.

Since a number of these children are so hungry for interpersonal connection, most of them invest a massive amount of time at their PCs, ignoring family members, homework, and much of the "real world." Even worse, for sleep patterns, the PC is "usually open." A number of these kids fall asleep later and later, particularly in the summertime, ultimately moving their sleep cycle so that they snooze when the rest of the family is up. This only worsens their lack of social skills, regardless of how successful their virtual character is becoming inside an online fantasy game.

While such cases are rare, mental-health professionals say the fantasy worlds offered by video games can become the stuff of very real addictions that destroy the education of an Aspergers teen. It's a huge and growing problem with older teenage males and young adult males with Aspergers. I've seen a number of cases with 18- to 23-year-old males where they have an Internet connection, and they basically haven't left the house for years. I had one young man who was trying to get on Social Security disability for agoraphobia. He didn't really have agoraphobia …he just didn't want to leave his computer.

My Aspergers Teen: Discipline for Aspergers Teens

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