HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Aspergers: Answer to Diagnostic Mysteries?

As a young child, Jayne was consumed by Pokemon, the collectible card game of animated creatures originated in Japan. It was no mere pastime, but an all-encompassing interest that engaged her considerable vocabulary to the exclusion of all other age-appropriate attachments or interests. And it was accompanied by other troubling signs: an inability to make eye contact with others, to engage with peers in a reciprocal fashion, and to make friends.

As Jayne matured, her social isolation deepened, as did the uncommon and all-consuming nature of her interests. As a teen, she developed an exhaustive knowledge about everything related to a fast-food chain in the state where she resides. At an age when conformity to the norm is at a premium and castigation of those who deviate is most severe, Jayne inhabits an island of her own inaccessible idiosyncrasy.

As little as 14 years ago, she also may have had difficulty getting a psychiatric diagnosis that fit. Too verbal and intellectually adept for autism, she was liable to get a diagnosis of obsessive-compulsive disorder (OCD), a personality disorder, or even schizophrenia.

Today, Jayne's primary condition is recognized as Aspergers, a close relative of autism distinguished by severe and sustained impairment in social interaction, but without the clinically significant delay in language acquisition characteristic of autism; also distinctive is the presence of restrictive, highly idiosyncratic interests.

First introduced in DSM-IV in 1994, Aspergers is still prone to being overlooked or labeled as something else. As in the case of Jayne, OCD is often diagnosed – she exhibits some of those features and receives medication for them. But overlooked before she was diagnosed with Aspergers was the severe and sustained impairment in social interaction, dating back to her earliest years.

Even a decade ago people had a good understanding about autism, but these “Aspergers-like” children fell between the cracks. They didn't fall neatly into any psychiatric diagnosis, and they didn't look like they had autism because their language was so well developed. People knew they were odd, but no one knew what to do with them. As a clinician in child mental health, it has been a great relief to have this diagnosis as something you can hang your hat on. These children have tremendous needs that must be met by schools and the medical community.

They Talk Before They Walk—

These are children who talk before they walk. Words are their lifeline, and from a research perspective, that's a critical observation that captures the difference from autism.

The Aspergers description went “underground” for several decades, but during an international field trial of autism conducted by Volkmar and others in the 1980s, a number of clients consistently surfaced, across cultures and languages, who matched the definition. From this emerged a consensus definition for inclusion of Aspergers in DSM-IV in 1994.

Now the criteria are in need of refinement and will likely be updated in the next edition of DSM. Chief among the difficulties with the current criteria is dependence upon the absence of criteria normally present in autism—namely, the lack of delay in acquisition of language at age 2 or 3—and the stipulation that if autism cannot be ruled out, it should be the diagnosis of choice.

While Aspergers individuals do not lack vocabulary or speech production and are often precocious in this area, they have trouble fitting language into context and lack other skills requiring intuition of social context. They may have a variety of language weaknesses as toddlers including delayed onset of speech, rattling on in tangential ways, and speech articulation problems. But they are of a different quality than those found in high-functioning autism, such as mutism or very severe deficits in vocabulary.

Clinicians say a client's history of language acquisition is difficult enough to ascertain when a patient first presents at the age of 10 or 12, let alone as an adult. When you see these children in the clinic, it feels somewhat artificial to make a distinction just because they had an early language delay.

If they had a language delay at age 3 or 4, I am forced by DSM to call it autism, and if they didn't and have a normal IQ, to call it Aspergers. That's not a problem because those who have the language delay often continue to have signs of autism. And often, the more severe cases end up being called autism and the less severe cases are Aspergers. But not always, and it can seem arbitrary eight or nine years down the road. If the family is overwhelmed, the least of their concerns is remembering exactly when the child first uttered single words and phrases.

Confusion over diagnosis, combined with a relative paucity of research, has resulted in extremely wide-ranging estimates of prevalence of Asperger's—between 3 and 48 per 10,000. Nonetheless, there are real differences between Aspergers and autism, and they need to be better spelled out.

So what should clinicians look for?

In making the diagnosis, clinicians should look for three bell-ringer traits. These are impaired social interactions, especially difficulty with social reciprocity; idiosyncratic interests or activities; and odd, mechanical, or socially inappropriate speech patterns.

As with Jayne, treatment may involve medication of secondary symptoms such as obsessive-compulsive tendencies or attention-deficit problems; antidepressants, anxiolytics, or atypical antipsychotic medications may be useful.

Social-skills training targeted at teaching specific, often rudimentary social rules and protocols is the other component of treatment. Social algorithms—how to respond to different social situations and verbal cues—allow patients with Aspergers to learn conversation and other social skills cognitively so they can approximate an intuitive sense of how to behave.

In contrast to autism, you want to use the verbal capacities of Aspergers clients as a pathway to treatment.

The long-term prognosis is not necessarily bleak; the intensity of interest and volume of knowledge that clients may bring to idiosyncratic subjects can make them highly valued workers as adults. Along a continuum the symptoms of Aspergers can at some point “fade to normal,” and there are those in the community of people with autism-spectrum disorders who resist being labeled as disordered. For young people, especially teenagers, the “different-ness” they experience can be traumatic.

Even when these children don't meet criteria for depression, they are very much at risk for demoralization. In middle school especially they can experience self-hatred and anger as they try to make friends and find more and more that people aren't interested in their favorite topics and aren't patient with their social awkwardness.

So there is a place in treatment for supportive therapy and psycho-education. Sometimes I will give them things to read about Aspergers, and they are incredibly relieved to know there is a disorder, and that other people have it – and have found a way to lead happy lives.

My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children

17 comments:

Anonymous said...

Thanks so much for all the helpful information!

This really helps since Asperger's is pretty new in the Philippines so there isnta lot of literature here about it. About the online books, I am asking my husband about is since il be using his international credit card if I go ahead with the purchase :)

again, thank you so much.

Darling

Anonymous said...

That's interesting, because my son has this same obsession, but taking him to an actual pokemon league has helped his social skills a lot!

Anonymous said...

My son has the same obsession as well!! My mouth just hit the floor!

Anonymous said...

Curious, how old are your sons? My daughter LOVES pokemon. She especially loves the small plush dolls of each character. She's 6. It's fascinating that Aspie kids love pokemon!?!?!

Anonymous said...

And in my case they don't grow out of it my 16 year old aspie daughter is still obsessed with pokemon and has been for about 10 years or so !!

Anonymous said...

My son too at that age loved pokemon. He is now 12 and has resorted to computer and video games. Not my first choice but learned to live with it.

Anonymous said...

My daughter is just leaving the Pokemon phase, but it was huge and also enjoyed Fruits Baskets Anime books. She is almost 13 and is now focused on the Warrior books. The middle school kids don't quite get her so she is still an outcast, but she is slowly finding the few kids who are either like her or are just plain kind hearted to her.

Anonymous said...

Pokemon league in our town has members from 6 to 60! All of them a little aspie, I swear :) While it is an obsession with our son, he has grown a lot playing with other kids. They accept him there as just another nerdy, quirky kid.

Anonymous said...

my son is seven and very obsessed with pokemon. He knows all the things they do their names abilities, they evolve, etc.

Anonymous said...

My 9 year old loves Pokemon, but is not obsessed with it. He does have all the names and skills down pat though.

Anonymous said...

doesn't the creator of pokemon has AS too? my 8 yo daughter loves them too.

Anonymous said...

Both my Aspies love Pokemon. While my son found it was something that brought him together with other kids, my daughter has had the opposite experience. There are not a lot of girls who like it. She seems to be leaving it behind and I think it is because the girls teased her so much about it. Too bad people can't just let people be who they are. This article is great. The paragraph is the key: Social-skills training targeted at teaching specific, often rudimentary social rules and protocols is the other component of treatment. Social algorithms—how to respond to different social situations and verbal cues—allow patients with Aspergers to learn conversation and other social skills cognitively so they can approximate an intuitive sense of how to behave
9 minutes ago · Like

Anonymous said...

Its interesting the article says many children arent diagnosed till latet. My son was finally diagnosed at 10 and this was due i think in part to his vocabulary. Since his diagnosis he has changed schools and with a lot of support is now becoming an independant young man at age 13. Great article.:)

Anonymous said...

Funny thing is the creator of pokemon has aspergers...my aspie so too is consumed by the passion of pokemon!

Anonymous said...

My 15 yr. old son was just like Jayne when he was much younger. He was obsessed with Pokemon until he moved on to Indie rock music. But interestingly, he wasn't formally diagnosed with AS until this year.

Anonymous said...

for my daughter it is Monster High. Amazingly, I even wrote to the creator of the Mattel series/dolls and told him my daughter has AS and that monster high is her life, and that it's taught her it's ok to be different... and he wrote her a sweet personal message encouraging her art and saying it was really cool to hear how MH has inspired her. I was really touched and I got to be the coolest mom in the world until the next meltdown at least. ;) lol. She wears her "imperfectly perfect" monster backpack like a badge of armor at school.

Anonymous said...

My 12 y/o daughter loves Pokemon, too! Or I should say borderline-obsessed with Pokemon, and has been for a few years now. She is also really into the Warrior book series that was mentioned on this thread. How fascinating that kids with Asperger's seem to like a lot of the same things. :)
14 hours ago · Like

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

Click here to read the full article…

Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes. The hardest part is you feel like you’ll never actually get to know your child and how he/she views the world.

Click here to read the full article...

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