ParentConfidante Blog

Changing the Diagnostic Criteria for Autism and Asperger Syndrome

The American Psychiatric Association is reassessing the diagnostic criteria for autistic and the proposed changes, as described in the NY Times article of Jan. 20,2012, may exclude many people who are now diagnosed as having Autism, Asperger Syndrome or Pervasive Developmental Disorder-Not Otherwise Specified (P.D.D.-N.O.S).  These diagnoses would be consolidated under one category - Autism Spectrum  Disorder - eliminating the Asperger's and PDD-NOS categories.  While the new criteria will have little impact on the diagnosis of youngsters who are "classically autistic" - those who have severe limitations in their cognitive and social functioning- there may well be an impact on those youngsters who are cognitively able but have a social disability.

Parents are understandably concerned given that mandated services (IEP) are often dependent on a diagnosis.  It will be important to see how the changes  will ultimately affect the delivery of services, but the attempt to clarify diagnosis is an important and needed undertaking. In the past, there has been a good deal of confusion especially regarding the identification of Asperger Syndrome - does every child who prefers to play alone have Asperger's and are deficits in social intreraction the main determinant?  In fact, there are other determining factors for a classification of Asperger Syndrome and many children who fall within this group need continued support.

There was some concern when it was first divulged that there would be a consolidation in criteria with Asperger's eliminated, because Asperger Syndrome, properly diagnosed, is distinct from classical autism and descriptive.  It will be important, in the tightening up of this diagnostic category, that those who need services continue to receive them.  While these youngsters are cognitively able, their narrow interests, perseverative behavior, and social incapacity makes it very difficult from them to succeed without support.

 

 

Manhattan Special Needs: Manhattan Needs More Special Needs High Schools like Churchill High School

I recently attended an open house at the Churchill School that was amazingly crowded with New York parents looking for an opening in a Manhattan Middle or High School.  Churchill School made it clear that there were very few spots available but that didn't keep the parents from asking very thoughtful, knowledgeable questions and appearing hopeful.  They were obviously hoping that their child would be the lucky one to get that opening in the 6th or 9th grade and hoping that more Manhattan parents would be transfered to San Francisco so another spot was available.  When asked where else their children were applying, some parents mentioned Winston Prep and  boarding schools for children with special needs (Landmark, Eagle Hill), but all bemoaned the dearth of High Schools in NYC for children who continue to need specialized instruction and organizational support.

It is surprising that there are so few secondary special needs schools in NYC.  I guess the hope is that most students will be able to thrive in mainstream schools if they get the help they need in the early grades.  However, the demands in Manhattan, Brooklyn, Riverdale, and Westchester high schools are intensive and children with learning disabilities often need continued support and accommodations.  Children with special needs have to work hard to compensate for their difficulties and they can be easily discouraged if the demands are overwhelming.   Although there are some non-special ed private schools that offer support programs, it may not be enough and it's no wonder that parents are concerned.

Recognizing the need, Aaron Academy and Mary McDowell Friends School have recently started high schools as an extension of their elementary schools.  These are welcome additions.  However, it seems that more is needed - what an entrepreneurial as well as educational opportunity!

For help in 2011-2012, toby@parentconfidante.com  or 646-300-1881 and hurry please as my schedule is filling quickly.

Help for NYC Siblings of Autistic Children (Unlike During Allen Shawn's Childhood)

In the New York Times Style Magazine (12/5/10), there is an excerpt from Allen Shawn’s upcoming memoir, “Twin”, in which he writes about the disappearance from his life at the age of 8 of his twin sister, Mary.  Allen, the son of William Shawn, the legendary New Yorker editor, describes how he felt when Mary, diagnosed as autistic, was sent to Sandpiper, a residential school for mentally disabled children.  Except for scripted letters and occasional visits, she vanished from the everyday life in Manhattan of Allen and his brother Wallace, leaving Allen disoriented, with a fierce fear of loss and a consuming focus on “truthfulness”.  As he puts it, Mary’s “departure from our life was like an unmourned death”.  The family rarely referred to her.

Mary is described as inner directed, but also connected to her siblings, showing affection and sometimes joining them in their games.  She could be erratic in her moods and not communicative verbally.  She is not described as explosive, out of control or a danger to herself or others and there’s no question that in our time, she would have stayed with the family.  What happened to Mary is reflective of how children with severe mental, developmental or emotional disabilities were treated in the 50’s and 60’s and her residential placement was no doubt recommended and supported by the professionals who were working with her.

Parents, often bewildered and surely guilty, felt that sending children with disabilities away was beneficial to them and the whole family and it seems that little notice was taken of the impact that such a banishment had on the other children in the family.  While it is probable that Mary’s life experience was narrowed and her potential curtailed, the impact on the other children was also profound.  Allen didn’t understand until he was an adult that his severe anxiety disorder was directly related to what happened to his sister.

There is currently much more of a realization of what should have been clear - that the normally developing siblings are impacted by the decisions made regarding the child with special needs.  Allen’s life experience would certainly have been different if his parents were able to talk about why they sent Mary away and maintain more contact with her.  However, in those days such openness would have been extraordinary.  More common then, and often now, is the shame and guilt that limits communication.

Today, there are programs available to help brothers and sisters of individuals with special learning, health, emotional of developmental needs.  One of the best known programs is Sibshops which provides a framework for siblings to meet with peers and share experiences, feelings and advice.  The meetings have a recreational aspect as well and are fun.  Many agencies sponsor Sibshops and availability should be checked on the internet. 

Perhaps if Sibshops were available for Allen, he would have been spared some of the emotional stress in his adult life.  But that wasn’t the style in those days (maybe that’s why this article was in the Styles section.)

I have lead Sibshops and know first hand how liberating and beneficial these groups can be for youngsters with special needs siblings.

In addition, numerous Manhattan, Brooklyn, New Jersey and Westchester families have hired me to meet privately with them to discuss how to help siblings of autistic children.  Luckily, today, we recognize the needs of all children in a family.