Childrens Medical Office  of North Andover, P.C.





 
DISORDERS OF SOCIAL COGNITION
Autism & Pervasive Developmental Disorder (PDD)

All children with social cognition weakness have certain things in common - beginning with their difficulty in both sending and "reading" non-verbal social cues & signals.  This often leads to strained relationships with peers or their being viewed by others as "odd".

Both PDD and Autism are defined by a core triad of difficulties:

  • Language delays,
  • Social Cognition weaknesses, and
  • Repetitive, "stereotyped", ritualistic and/or self stimulatory behaviors.

This "triad" encompasses a WIDE RANGE of children however, as it says nothing about how severe any or all of the three weaknesses are, nor does it speak to underlying intelligence.  Thus the spectrum of children in this diagnostic category ranges from severely mentally retarded, low functioning kids, to kids who are able to do a lot but who are "in their own world" and relatively out of touch with ours, to very bright even genius level kids who are very odd in the way they relate to others, behave, and communicate.

Much current thinking would do away with any distinction between the terms Autism and PDD, and basically treat them as synonyms which demand qualifying adjectives and narrative description of functional level.  Older attitudes reserved the word "Autism" for the relatively low functioning and out-of-touch end of the spectrum, kids who fit a rather narrow "classic autism" picture, and used the PDD terminology for the higher functioning and less "classic" kids.



Pervasive Developmental Disorder - Terminology

PDD is not a new diagnosis, or even a new term.  Depending on the person using it, it can be a synonym for Autism, or it can be used to denote "high functioning Autism" or Autism in an otherwise bright child. PDD as a term was coined and became popular in the 60's and 70's because certain professionals did not like the term Autism, or perhaps didn't like applying it to such a broad group of kids and wanted a more "benign" sounding word for the milder end of that spectrum.

Parents are often confused by the letters "NOS" in association with PDD.  This stands for "Not otherwise specified" and is clinically MEANINGLESS.  It is taken from BILLING MANUALS, not clinical texts or research.  For instance, the billing codes manual used by all physicians to submit claims to insurance has one code for "Rheumatoid Arthritis", another for "Osteoarthritis", another for "Septic Arthritis", and one for "Arthritis NOS" which is supposed to be used when the doctor doesn't know yet which kind of arthritis you have, but he/she does think it's arthritis of some sort.  In practice many docs use the "Arthritis NOS" code for ALL types of arthritis because it simplifies work for their billing staff and the insurance company will pay the claims either way.  Well, the way the people who write the billing codes manual "translated" the clinical situation with regard to PDD vs. Autism was to consider "Autism" the more specific diagnosis and "PDD" the equivalent of "NOS".  Silly stuff.  PDD means exactly the same thing with or without the "NOS".  Certainly grandma doesn't go around talking about her "arthritis NOS" so parents shouldn't talk about "PDD-NOS", just PDD or Autism.



Diagnosis

Infants who later are diagnosed with Autism are often said to have been difficult to console, or to have not liked to have been held/cuddled, but these things are not exclusive to Autism.  The earliest reliable signs of Autism or PDD usually appear around 9 months of age, when the expected developmental milestones of referencing and joint attention (pointing things out to and sharing ones play experiences with others) fail to appear and eye contact may first be noticed to be poor.  Some language may start to develop before 15 months, or it may not.  Even if it does, however, it is often lost in the second year of life, when repetitive and self stimulatory behaviors often develop as well.

An experienced professional can SUSPECT autism (and end up being right >90% of the time) within 5 minutes of meeting a child, but CONFIRMATION of the diagnosis really demands a multidisciplinary approach, with at minimum a physician (Developmental Pediatrician or Child Neurologist), Psychologist, and Speech & Language pathologist each doing evaluations (and hopefully working together as a team). Psychiatrists, social workers, physical & occupational therapists, and early childhood education specialists can round out the team - but are optional.  Anytime PDD/Autism is suspected, the child should be evaluated by such a team.



Prognosis

Even within the PDD or Autism categories, these children are not all alike. They differ widely in intelligence, language skill, attentional ability, behavior, and academic performance just like other children do. The diagnosis (or "label") they are given actually often depends on their profile of strengths and weaknesses in these areas, and in particular prognosis can be greatly improved by strong underlying intelligence, which is hard to assess at age 2 (the age most such children are diagnosed).

It is very import for parents of kids with Autism or PDD not to give up hope, and keep advocating for their child. The prognosis is quite VARIABLE and hard to predict in any one child, even for the best experts and teams. I've seen kids who look low functioning at age 2 or 3 make huge progress and not look so bad by age 7-8. I've seen some (at all functional levels) evolve into adult schizophrenia and psychosis. But I've also seen kids with PDD seem to put the "disability" part behind them and become very successful, albeit eccentric, adults both professionally and socially - essentially "evolving" away from PDD/Autism and towards more of an Asperger's picture.  The children most likely to have this happy outcome are those who receive EARLY diagnosis and institution of a treatment program that incorporates ABA techniques.



Medications for Autism or PDD

No medication has been "proven safe and effective" in Autism or PDD, high or low functioning. Almost every psychiatric drug imaginable has been TRIED - few have been reliably found helpful, although sometimes one or another is reported to be effective anecdotally, in individual or a small group of cases. It seems to be a very individual thing... some kids with PDD will respond to one or another med while others won't, and the "state of the art" really isn't very far beyond trial and error.

The exception to the above is a "neuroleptic" or "major tranquilizer" such as Haldol or Mellaril... the same drugs used in adult schizophrenia. While these certainly help, it is debatable whether they help the child vs. the child's caretakers more. In addition, when started in childhood the long term risk of developing complications from such meds such as tardive dyskinesia is HUGE and this is why we are generally very reluctant nowadays to start such meds in autistic childen unless there is just no other option.

SO... in the meantime there are MANY other meds which SOMETIMES work in individual children with PDD, although they don't statistically work better than placebo (or have never been adequately studied) in large groups of PDD kids. They include TCA's (especially Anafranil and Desipramine), SSRI's (such as Prozac), Clonidine, stimulants (such as Ritalin), Depakote, Naltrexone, and Klonipin. I should say that all these meds also sometimes backfire and make the kid considerably worse (especially the stimulants). When trying any and all of the above it helps to pick one or two "target symptoms" and track them closely and semiquantitatively to judge medication effect... relying on the subjective impressions of parents and teachers is not wise because the DESIRE to see some benefit is huge.

The bottom line is that finding a medicine that's right for YOUR child is a trial and error process best undertaken by a physician (Child Psychiatrist, Developmental Pediatrician, or Neurologist) who is very experienced with or specializing in PDD/Autism, who is willing and able to get to know your child WELL before embarking down this road.



Illegitimate Theories & Treatments (unproven or, worse, proven false)...

SECRETIN is a hormone involved in stomach digestion that in the past few years has been said by some to have beneficial effects when given to children with Autism/PDD.  While initial reports were interesting/promising, recently published research shows that its not effective.

There is also no truth to (or evidence to support) such purported causes or treatments of Autism such as "The Yeast Connection", vitamin deficiencies, food allergies or the Feingold Diet. These things are total quackery.



Sensory Integration

Many children with PDD or Autism are at one point or another also said to have "Sensory Integration" problems. Often this "diagnosis" precedes the more accurate one of PDD/Autism, other times it is something a family finds helpful after the diagnosis PDD/Autism is made. Whether it represents an "additional" diagnosis or is rather part and parcel of PDD/Autism is debatable.

Sensory integration is a relatively new and controversial "construct" coming out of the Occupational Therapy field. It postulates that certain young children have developmental delays on the basis of a neurologically based difficulty "integrating" or processing sensory inputs. Such children become easily over-stimulated and when they do they "shut down" and become defensive, avoidant, and they fail to learn, grow, socialize and relate to their environment in a normal way. The critics of Sensory Integration theory (of which I am one) would hold that this is nothing more than a new way of slicing the same old pie... that such children have a variety (each his or her unique combination) of other more traditionally defined disorders such as ADHD, Autism, PDD, Anxiety, Obsessive Compulsive Disorder, extreme shyness, Motor Dyspraxia, etc. This argument over theory, however, is in some ways beside the point. Whether or not "Sensory Integration" problems are a new and separate diagnosis, the fact remains that "Sensory Integration Therapy" can be VERY BENEFICIAL for many children with any and all of the above diagnosis and as such represents an advance in the treatment we have available.



Applied Behavior Analysis (ABA)

Applied Behavior Analysis (ABA), also known as the Lovaas method after UCLA psychologist Dr. Ivar Lovass who originally developed it, is the most scientifically proven and effective treatment approach for Autism.  ABA treatment works best when started early, preferably in the toddler & preschool years, and when applied intensively both at home and at school.  The basic approach is to teach new skills by breaking them down into small steps, modeling those steps to the child, and then giving strong positive reinforcements (rewards) to encourage repetition of the behavior and eventual internalization of the skill.  This modeling of small steps in a more complex skill is also sometimes called Discrete Trial Therapy, or DTT.  ABA/DTT/Lovass therapy focuses on rewarding behaviors that lead to new skill acquisition, NOT on controlling or extinguishing undesirable behaviors.  Undesired behaviors are ignored, not punished.  No "aversive" treatments are used.

ABA therapy requires patience, training, and a LOT of one-on-one work by trained therapists.  A typical program involves 30-40 hours per week of highly structured one-on-one teaching for 2 or more years.  At the outset training even the simplest behaviors (e.g. "touch this" or "look at me") can take many hours over many days or even weeks to succeed.  However, as time goes on the the child learns the program, learning accelerates.  This may sound difficult, but the rewards are worth it.  Without ABA therapy around half of all children diagnosed with Autism at an early age end up functioning at a "mentally retarded" level, while with ABA that percentage drops to under 10%.  Without ABA therapy fewer than 5% of children originally diagnosed with Autism end up with "normal functioning" (meaning they can be placed in a regular classroom with special supports or assistance eventually).  ABA increases that percentage to nearly 50%.  No other treatment program for Autism/PDD can boast those kind of results.

For more information about ABA resources in Massachusetts try the following contacts:

The Autism Partnership for ABA (TAP)
508-478-7TAP
Email: MASSTAP@prodigy.com

(Please note this organization has no paid staff, so you may need to leave a message on a machine and someone will get back to you.  They are a good source of referrals to parents in your area with ABA programs up and running in their homes, and they also sponsor monthly meetings.)

CMS Associates
Mashpee, MA.
508-477-2598

(Parent Support & Advocacy)

The May Center for Early Childhood Education
Arlington, MA. 
781-648-9260

(home & school based programs)

The New England Center for Children
Southborough, MA
508-481-1015

(home & school based programs)

Families for Early Autism Treatment (FEAT)
http://www.feat.org/



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