Category: Autistic Spectrum Disorders

Autistic Spectrum Disorders includes pervasive developmental disorders: aspergers, autism, pervasive developmental disorders & autism

Is your child autistic? What is autism? Why so differently expressed from child to child?

Think of ‘autism’ as the combination of two primary  colors — yellow and red.  Imagine the following:   you take a glass of water.  You squirt a bit of YELLOW acrylic paint into the jar and mix it.   The water looks yellow.   Then you take a tube of acrylic RED paint and squirt a bit into the jar and mix it.  What happens?  The water turns ORANGE.

‘Autism’ is defined by the Diagnostic and Statistical Manual (DSM-5).

The DSM can be validly likened to what happens when different colors are combined.   With  a  differential  diagnosis of  autism — there are TWO different  “colors’ that are combined.

DSM-5 CLASSIFICATION [this is then continuum of symptoms] 

Autistic  Spectrum  Disorder  

 How is the color RED combined with the color  YELLOW?     

Color  RED:      [A = deficits in social communication & social interaction across multiple contexts

  1. Deficits in social – emotional reciprocity  ….
  2. Deficits in nonverbal communicative behavior used for social interaction
  3. Deficits in developing, maintaining & understanding relationships

Color YELLOW   = restricted & repetitive patterns of behavior, interests or activities as manifested by at least TWO of the following

  1. Stereotyped or repetitive motor movements (lines up objects..)
  2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior
  3. Highly restricted fixated interests that are abnormal in intensity of focus
  4. Hyper or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (adverse response to specific sounds or textures, excessive smelling or touching of objects…)

Your child will have more of one symptom and less of another and still may be diagnosed with ‘autism’.

Each child’s combination of  RED symptoms with the YELLOW symptoms produces a different color.

Now consider what happens when I.Q. gets added to this mix of two colors  — symptoms RED added to  symptoms YELLOW.      Back in 1999 roughly 70 percent of children diagnosed  with ‘autism’  were also diagnosed  with Mental Retardation (aka Intellectual Disability). That picture has changed dramatically.  Now,  roughly 70% of children diagnosed with autism do not have a diagnosis of Intellectual Disability. That is a huge, dramatic  change.

Today, children with autism grow up and do get jobs, marry and  leave home.  All the’symptoms’ are a bit of this and a bit of that.  Some autistic children understand humor better than others.  Some autistic children have incredible  memories for certain subjects. Some children with autism can play sports and some have no clue.

Each child’s symptoms will be expressed uniquely  — just as two colors are combined will produce very different colors.  Many children with autism will need substantial supports.   And today, increasingly, those supports are available.

written by   licensed Psychologist   PSY 14762  Cameron Jackson, Ph.D.

 

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Autism Resources Actually Helpful?

autism

Autism resources actually helpful?  Asked whether they use the internet as a resource for autism many parents often do not do so — frequently as they are too overwhelmed with getting through the day.  What resources have you found really useful?  And why?  Here’s one list below.  Please share your thoughts.  Thanks.   DrCameronJackson@gmail.com

Top 10 Autism Websites Recommended by Parents

 By Maureen Higgins, Eden II Marketing Intern

Searching for autism information on the web can be overwhelming. The word “autism” alone results in over 64 million hits on Google. So, where do you turn to for the most relevant information and resources  when there are so many different options? We polled parents of Eden  II participants, asking them this question, and these were the top 10 results:

1. www.autismspeaks.org -One of the leading autism science and advocacy organizations. Autism Speaks provides a comprehensive resource guide for all states. The site also boasts an impressive list of apps that parents may find useful, including games that focus on communication and social skills.

2. www.autism-society.org -Another great site that includes helpful resources for those with autism,  family members, as well as professionals. Autism Society also gives updates on the latest autism news and press releases.

3. www.disabilityscoop.com – Sign up for Disability Scoop’s e-mail news to receive the most current updates on developmental disabilities. Disability Scoop’s experts have been cited by multiple online news sites, including USA Today and People.com.

4. www.autismnj.org -Run by a network of professionals and parents, Autism New Jersey strives to provide New Jersey residents affected by autism with the most up to date information, including info on Health Care and insurance mandates in New Jersey.

5. www.autism.com– The Autism Research Institute focuses on researching the causes of autism, as well as developing safe and effective treatments for those currently affected by the disorder.

6. www.autismweb.com – Managed by parents, AutismWeb includes great insights on different autism teaching methods. The site also  provides a forum where parents can go to share their stories, give updates on their children’s progress, and share recipes that may be useful for picky eaters.

7. www.ahany.org – The Asperger Syndrome and High Functioning Autism Association website offers some great resources for those with higher functioning autism. Ahany also provides a great list  of summer programs and day camps in New York, as well as useful questions to ask when choosing a camp or summer program for your special needs child.

8. www.autismhwy.com -Started by a woman whose son was diagnosed with autism, Autism Highway is both informative and fun. Easy to navigate, Autism Highway provides an extensive list of Autism related events and specialists. In addition, Autism Highway includes many fun games that children are sure to enjoy!

9. www.autismbeacon.com – Also started by the parent of a child with autism, Autism Beacon strives to supply the best resources for autism treatments. Autism Beacon presents a lengthy range of articles on autism, including sensitive topics such as bullying and sexuality.

10. www.autism.healingthresholds.com – Healing Thresholds includes information on many different therapy treatments for children with autism. The site focuses on the top 12 used by parents, but also includes useful information on nearly 100 additional therapies.

 

http://eden2.org/top-10-autism-websites-recommended-by-parents/

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autism screening with smartphone?

 

app screens for autism
Autism screening with smart phone

Autism screening with smartphone? Yes! This is a bold, big idea that can work if done right.

There’s now  an app that researchers use  to screen for autism.   The app  uses Apple’s Research Kit technology.  Duke researchers are involved.

Researchers seek to  collect information from families around the world to test whether a smartphone app can reliably screen kids for autism.

The app includes a parent questionnaire and  includes  a series of short videos for the child to watch. The videos are  designed to elicit various emotions. Using the iPhone’s camera function, analytical software within the app will assess the children’s facial responses.

 

app screens for autism
app screens for autism

Researchers hope  to collect information from children ages 1 to 6 three times each over the course of six months. Parents will receive feedback, which could include tips for addressing behavior issues or a recommendation to seek further  evaluation.

“Our goal is to develop a screening, like hearing or eyesight at schools,” said Guillermo Sapiro, a professor of electrical and computer engineering at Duke. “They don’t get glasses — they get a referral.”

http://www.disabilityscoop.com/2015/10/16/apple-autism-research/20881/

There are major league problems of course.  Privacy of information for one.  All sorts of data gets stolen these days and such a huge collection of information about people is invaluable  and can be misused.

This particular research at Duke University plans to collect data only three times over six months from the same child.  Results would be much stronger if results were taken for the same child over a much longer period of time — from age one to age four for example.  Six months and three snapshots of the same child is just a snapshot for a very small period of time relative to general development of language and social abilities.  But this is a beginning and parents may find this app  useful whether to seek additional assessment.

If you are a parent in California wondering whether your young child has social development delays  or other delays contact your local Regional Center and ask for Early Start Services.  Early Start services assist children with developmental delays from birth to age three. California Regonal Centers provide Early Start services.

If you suspect that your child has substantial delays in several areas your child may be eligible for ongoing California  Regional Center services at age three.  Whereas in 2009 approximately 1 child in 155 had autism as of 2015  one (1) child in 66 has autism.

As substantially  more children at being diagnosed with autism it’s reasonable to expect that more children in California   (those with substantial  delays in several areas of functioning and a recent, valid  diagnosis of Autistic Spectrum Disorder)  will be eligible for  ongoing Regional Center services at age three.

If you suspect that your child may be substantially delayed in several areas, before the  age three request assessment for ongoing Regional Center services.  Check the website for your local Regional Center as to exactly what you need to do to request ongoing Regional Center  services at age three.

For children ages 0-3  living in Santa Cruz county, Monterey county, San Benito county and Santa Clara county contact:   http://www.sanandreasregional.org/early-start/

As many children with autistic spectrum disorder symptoms have behavior problems which can substantially  affect overall safety of the home ongoing Regional Center services after age three can be quite helpful for parents.

If you live in Santa Cruz County and want additional information concerning your child’s  developmental delays,  you may contact licensed psychologist Cameron Jackson PSY14762 for a free initial screening.

Dr. Jackson’s office is in Santa Cruz, CA.   (831) 688-6002    DrCameronJackson@gmail.com

 

 

 

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why huge increase autism 1990 to 2000

toxicity
TOXICITY SYMPTOMS

Why huge increase autism 1990 to 2000?   Nine (9)  of 10,000 kids born in 1990 got autism.  Ten years later, in 2000  forty-four (44) in 10,000 had autism.

Enviornmental causes? Yes.  It’s time to focus on  metals, pesticides and  infectious agents says  researchers  at M.I.N.D.

 

A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted — and  the trend shows no sign of abating.

Published in the January 2009 issue of the journal Epidemiology, results from the study also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California’s children.

“It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California,” said UC Davis M.I.N.D. Institute researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology and an internationally respected autism researcher.

Many researchers, State of California organizations and advocacy organizations view rise with skepticism says Dr. Iva Hertz-Picciotto.

The M.I.N.D. research is based on data provided by the California Department of Developmental Services.  The DDS  research was published in April, 2003 and is available on the California Department of Developmental Services  website.

toxicity
ENVIORNMENTAL FACTORS

http://www.ucdmc.ucdavis.edu/welcome/features/20090218_autism_environment/

We know there is a huge increase in autism.  In 2009 there was 1 in 150. Now in 2015  one child in 65 that have autism. That’s a huge increase.

So are  children getting identified earlier and receiving California Regional Center services any earlier than in 2005?

Are parents in 2015  who get California Early Start services requesting assessment for on-going Regional Center services at age three?

If you suspect that your child is not developing normally in social communication abilities and your child is under age three you can request assessment by your local Regional Center psychologist  for ongoing services.

If your child has a valid  diagnosis of autism and is substantially handicapped in three (3) life areas your child may be eligible for on-going Regional Center services.

M.I.N.D. researchers say that California state agencies are skeptical about the rise of autism.

The facts are there.  Why are California state agencies skeptical?   Perhaps agencies are skeptical  because on-going services for autism are expensive?

On the website for the Department of Developmental Services on the right side under publications you can find all the DDS publications available for download as a PDF file.

http://www.dds.ca.gov/

Contact Cameron Jackson   DrCameronJackson@gmail.com  for further information

 

 

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CA Regional Center fails sniff test

CA Regional Center fails the sniff test.

SARC fails sniff test
CA Regional Center fails sniff test

Consent  is a big deal. Written consent starts many important things such as:  Will you marry me?

 Will you have my child?  Will you co-sign on a loan?

 I  consent that my child  receive special education services.  Yes consent  is a big deal.   For many reasons.

 

However, when it comes to consent, San Andreas Regional Center fails the sniff test. And this is probably true for other  Regional Centers of which there are 21 in California.

 Exactly how San Andreas Regional Center  fails the sniff test is described below. First, some comments  why consent is so important. Think about consent in general and why  written consent  is important:

Most people understand that consent matters and is a big deal. For example,  everybody goes to the doctor.  Everybody who goes to the doctor has to sign a consent for release of confidential information.  Everybody knows that without  written consent  records cannot be sent electronically.  Thus most people have  some understanding that signed consents matter and are a big deal.

Another example:   Many children get Early Start services.  Early Start services are provided by California regional centers such as San Andreas Regional Center.  Parents  must sign written consent before assessment will start.  No consent signed?  Then no assessment and no services.

Many children who receive  Early Start services improve considerably. Some children, however, make little or very slow progress in their social skills and how well they manage change.

 Some of these slow developing children show  substantial symptoms suggestive of autism.  Early Start is required by law to contact the local public school and set up what is called a “transition” meeting.

Some children with autistic symptoms  may be eligible for ongoing regional center services under the California   Lanterman Act

Given the above,  might think  that before any assessment occurs for Lanterman eligibility for  ongoing services  that someone legally responsible must  give written  consent.  That would logically follow.  But, no.

 Guess what!   No written consent is  obtained by SARC  when children transition  out of Early Start and may be eligible  for  ongoing services.

This is when  CA Regional Center  fails  the sniff test.

 San Andreas Regional Center SARC  does not get written consent  prior to assessing  Early Start children who might be eligible for ongoing services.

 This CA Regional Center  only gets written consent one time  — prior to assessment   Early Start services.

So what?   Does it matter that San Andreas Regional Center  does not get  written consent from  Early Start  children  who might transition to ongoing services at age three?

Yes! No written consent translates into no current medical or school information will be obtained and thus  not  available forreview by  the psychologist  who assesses that child.

And,  as a result a less than minimum report may  be produced  by CA Regional Centers  based on limited  or out of date records.  Does this pass your sniff test?  Nope.

This kind of behavior — where CA Regional Centers  may meet the minimum requirements of the law but fails to implement best practice guide lines for the assessment of autism  –should stop.

 It is time that  all CA regional centers  meet the guidelines recommended by the California Department of Developmental Services (DDS) for the assessment of autism in young children.  San Andreas Regional Cener  knows what those guidelines are.   It’s time that  this CA Regional Center  met those guidelines willingly.

It all starts with consent.  Yes, consent is a big deal.  And consent leads to obtaining and sharing current information about young children   some of whom have substantial autistic symptoms.  And some of  these children  can and should be eligible under autism  for ongoing  regional center services  at the age of three.

Should the public   and parents require regional centers to get consent prior to assessing for autism?  Yes.   Consent if a big deal for many reasons.  And then act on that consent.   Get up to date, current medical and school records after getting consent.  Yes, consent is big deal and matters.

What you can do:  email your California representatives and say it’s high time that Regional Centers meet best practice guidelines for assessment of autism.  Contact your local public schools and ask them to pressure the Regional Centers to get parent consent and use up to date standardized tests when testing children for autism and other developmental disabilities. And contact the California Department of Developmental Services to put pressure on specific regional centers such as San Andreas so that they will more fully meet best practice guidelines.

Did you know that the former boss of San Andreas Regional Center is now the top boss of the agency (DDS) that writes the best practice guidelines?   He is Santi Rodgers and his email address is available on the DDS site.  Let Mr. Rodgers know that you want best practices used when children are assessed for autism.

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CA Regional Center in the dark re autism

SARC in the dark
CA Regional Center in the dark re autism

CA Regional Center fails sniff test.

Yes, San Andreas Regional Center   seems in the dark regarding  autism. There are 20+ regional center services    that provide services to substantially disabled persons  in California diagnosed with autism and other developmental disorders.

But maybe  SARC  is  just  whistling in the dark – hoping that the criteria   and the number of children getting diagnosed with  autism will change soon.

 

Increase in autism
Huge increase in autism

  For sure, San Andreas Regional Center  keeps  some families in the dark about autism.

For example, look what San Andreas Regional Center  incorrectly  wrote to one family when the agency  denied services.  The statement below paraphrases  what  the family received and is not an exact quote.  The letter states:

Autistic Spectrum Disorder is diagnosed when the impairments in communication  and    social interactions  are pervasive and sustained and  not supported by …. 

The letter referred to  was  signed by the San Andreas Regional Center  specialist for autism.  This person  knows and  sets policies. 

Note the use of the word “communication” in the denial for services letter.   What!!  That is so misleading!

When making a diagnosis of autistic spectrum disorder the clinician must state whether the child with autism has or does not have communication difficulties.   Yes –  using the DSM5 criteria for autism — children can be diagnosed with autism and not have communication difficulties.

First of  all, this  denial letter is not accurate concerning the child’s possible  “communication” deficits.   The issue is social communication difficulties not whether this child can verbally communicate.

Secondly, this  SARC  denial letter leaves out  any discussion whether the child has restricted, repetitive  patterns of behavior or activities.

 To summarize,  SARC leaves out one main area [restricted, repetitive patterns of behavior or activities]  and the other area [social communication and social interactions]  is discussed incorrectly.  This above quote is from the letter  one family got from  SARC as an explanation why their child has been denied  California regional center services.

What SARC aka San Andreas Regional Center  should have written:

Autism is diagnosed when there are  “Persistent deficits in social communication and social interaction across multiple contexts…” and those social deficits are  coupled with  “restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history….

The diagnosis of autism changed dramatically when the Diagnostic and Statistical Manual Fourth Edition (DSM-4) was replaced by DSM5.

You decide.  Is SARC in the dark, whistling in the dark or  keeping  some families in the dark  about autism?

____________________________________

http://www.sanandreasregional.org/

http://psychcentral.com/blog/archives/2012/12/02/final-dsm-5-approved-by-american-psychiatric-association/

Diagnostihttp://www.icd9data.com/2012/Volume1/290-319/295-299/299/299.0.htmc Criteria for Autism Spectrum Disorder

DIAGNOSTIC CRITERIA FOR AUTISTIC SPECTRUM DISORDER

  1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):
    1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and non-verbal communication.
    3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
  2. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive):
    1. Stereotyped, or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
    2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
    3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
    4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
  3. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capabilities, or may be masked by learned strategies in later life).
  4. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  5. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
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There’s a dog in my bed

 

dog
There’s a dog in my bed

There’s a dog in my bed.

 A mother whose child was so badly behaved  she convinced herself that  he was autistic.  Then  the mother   found  out the real reason for the child’s behaviors:   the family dog.

Three-year-old Billy was prone to violent temper tantrums.  He  even hurled a bike at his mother Robyn on one occasion.

 Checking things out, sleep expert Debs Sugden observed video  footage which showed the family dog and cat kicking Billy out of his own bed.

 The sleep expert  explained that  Billy’s  broken sleep had led to him suffering from ‘delayed sleep phase syndrome’ . This is a  medical disorder where sleep is delayed two or more hours past the conventional bedtime.

—————————

 Firenze Sage:  Well the smart little bugger sure fooled them this time.

http://www.smashwords.com/books/search?query=four+more+obama+years

http://sleepfoundation.org/sleep-disorders-problems

http://ibabysleepteacher.com/

Born Naughty? Episode 4 - (Billy)
Billy kicked out of his bed by pet dog

 

http://www.dailymail.co.uk/femail/article-3109623/Mother-thought-child-autism-bad-behaviour-discovers-real-reason-sleep-deprivation-caused-family-DOG-stealing-pillow.html

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parents manipulate process for autism services hoisted on their petard?

 

 

educator/parents manipulate process seeking services
parents manipulate process for autism services

Parents manipulate  process for  autism services hoisted  on their own petard?

Here’s a list of  what NOT to do when seeking services for a child with substantial delays such as autism or intellectual disability.

And if you do the following  – don’t expect the process to go smoothly!

That the parents are both teacher/ educators which is a profession prone to “know it all” types may have  played  a role in what happened and that these parents today  are still clueless.

The family  first went to  an  M.D.  who made recommendations that a handful of evaluations be done & then  to come back to discuss the results.  The parents  did not follow through on any of the MD’s  recommendations concerning assessment.

Instead, the parents went to a CA  agency that provides services to children with developmental disabilities.  There, the parents:

  • Told  the agency  exactly  what diagnosis to give their child.   And what diagnosis was not acceptable.
  • Spent most of the  first interview  saying NO when asked for additional info/ records.
  • Refused permission for the agency  to  observe the  child  with same age peers at school.
  • Created  a  pseudo history of  events via email trail.
  •  Provided false information  because their advocate told them to do so.

Overall, these parents/ educators  tried to manipulate the  process from start to finish.  What happened?

Hoist by they own petard!  One thing lead to another and the end result was that the parents did not get the diagnosis they expected.  So they they tried to change the diagnosis through a complaint process. And that did not work.

The parents feel “stuck” with a diagnosis they do not agree with. Shown the support for the diagnosis they still want to reject it. And the parents state that they feel that the process was a painful one.  Well, the actions they took (see above bullets) resulted in effects they did not expect.

It is hard for parents to accept that their child not only meets criteria for autism but also for intellectual disability.

What about the child?  The 13 year old substantially delayed child still does not have an Individual Education Plan (IEP). The parents, both educators, say that they don’t want their child  harmed through special education  categorization or certain medical  diagnosis which they don’t accept.

In my view, just as water seeks its own level, many children with disabilities are more comfortable educated with children who share similar  abilities.  I hope that this child does get an IEP and can have connections with children who share similar abilities and interests.

 

http://http://www.autismsupportnetwork.com/news/category/parents-and-friendsaut.sagepub.com/content/3/3/273.abstract

Cameron Jackson, Ph.D.    DrCameronJackson@gmail.com

Dr Jackson is a psychologist with a private practice in Santa Cruz, CA   831 688 6002

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Politics to making a diagnosis of Autism? Yes!

Politics to making a  diagnosis of Autism  and/or  Intellectual  Dsability? Yes!!

Comorbid conditions with Intellectual Disability include Autsm
Comorbid conditions with Intellectual Disability include Autsm spectrum disorders

Times have changed. In the last 5+ years,  a diagnosis of Autism is sought after as a diagnosis particularly if the other diagnosis  to rule in or out is Intellectual Disability formerly Mental Retardation. 

Intellectual Disability affects many more areas of functioning relative to Autistic Spectrum Disorders
Intellectual Disability affects many more areas of functioning relative to Autistic Spectrum Disorders

See the post below wherein the MD is haunted by a diagnosis of mild Autism which she made 20 years ago.  Perhaps if  that MD had suggested what treatments could be offered for mild Autism  and typical progress made through social skills training, then perhaps the parents might have returned on their own for follow up appointments.

Twenty years ago we did not have internet. Now, it’s possible to get e-mails and immediately set up a connection with parents so as to address their concerns.

Recently, I diagnosed a 13 year old boy with Intellectual Disability, Unspecified. My guess is that he has Moderate ID, i.e., an I.Q around 40-50.    When the parents were interviewed they said that they  wanted  a diagnosis of Autism.  Later, at another meeting they  entirely rejected a  diagnosis of Intellectual Disability.  Because Intellectual Disability affects all areas of general functioning whereas Autism is more limited it will not take 20 years to see which diagnosis is more accurate.  The politics of this diagnosis still reverberates.  Parents want any mention of Intellectual Disability stricken from our records. Politics involved?  Yes!!

DrCameronJackson@gmail.com

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Haunted by an autism diagnosis: A sense of closure after 20 years

 | CONDITIONS | JULY 27, 2013

I believe most physicians have cases that haunt them, often patients whose treatment courses do not go ideally and who leave a mark on the physician, altering the way he or she practices ever after. When the physician is a surgeon, it might be a patient who died on the table. For a hematologist, it might be a patient with cancer who could not be cured. For a developmental pediatrician, it is likely a patient diagnosed with a developmental disability whose family vehemently disagreed with the diagnosis. Since the vast majority of developmental disabilities are lifelong in nature, when a child receives such a diagnosis, it is a life-altering event for the family. And such events do not always go well.Last week, I came to work and among the charts in my mailbox I found one from the medical records department. Such charts appear periodically and require my review and signature in order for records to be released. The records had been requested for social services documentation. A sticky note was attached, noting that it was a very old case. I recognized the name right away. I looked through my original notes and the case came back to me in detail, just as I had remembered it all these years.More than twenty years ago, when I was a brand-new fellow in neurodevelopment at the Children’s Evaluation and Rehabilitation Center, here at Albert Einstein College of Medicine, one of the first children I evaluated was a six-year-old boy. This boy was brought in by his parents—his father, a lawyer, and his mother, a social worker—for evaluation of his learning and behavior difficulties. To me he seemed bright, but I had to work hard to get his attention. His mind seemed to be elsewhere. He had poor eye contact and trouble having a conversation. No matter what we were talking about, he kept bringing the conversation back to the topic of dinosaurs, clearly his passion. And he was quite expert about that topic, with an impressive vocabulary.Fast forward to two decades later. I am now the director of autism services at the Children’s Evaluation and Rehabilitation Center, but even back then I was interested in autism. While I knew that this boy did not have frank autism, it was clear to me that he had the flavor of autism, with its hallmark social and communication impairments and restricted interests. In our subsequent multidisciplinary team meeting, I remember making the case to clinicians far more experienced than I (all of whom are now either retired or deceased) that this boy had mild autism, or pervasive developmental disorder not otherwise specified. The other evaluators were ready to diagnose the child with language impairment and attention deficit hyperactivity disorder, but needed convincing about the mild autism. I persisted. In the end, the team leader said that I could present my opinion to the child’s mother and make my case to her.

It was my first parent conference ever. I had watched an experienced social worker give a series of diagnoses to a family and now—following the “see one, do one” model—it would be my turn. Things started off well. When I reviewed the cognitive and language data, the parents were attentive and the mother’s nods indicated that the information was consistent with her own thoughts about her son. When I moved on to discuss the constellation of behaviors that included poor eye contact, conversational weaknesses and restricted interests and suggested that they might be manifestations of mild autism, the mother vehemently stated her disagreement. She said that she “had seen autism and this was not it.”

The family never returned for the scheduled follow-up appointments. I had no information about what had become of the boy. But I thought of him over the years; he haunted me. I went on to develop a clinical and research passion for autism and to head the RELATE program for early diagnosis and treatment of autism here at Einstein. The field of autism changed in the background, with the concept of the spectrum of autism becoming widely accepted. But I wondered through the years if, in my clinical debut, I had jumped the diagnostic gun. Had I given these parents an incorrect diagnosis for their son—one with lifelong implications? The case haunted me as I wondered whatever became of the boy and his family.

I looked back at the old chart and the release of records form and found that there was another sticky note affixed to the record. It said that the patient was currently being seen on the adult unit, and those recent records were also attached. I excitedly flipped through the pages to find the new report. The record began: “The client is a 29-year-old male who reports that he was diagnosed with mild autism as a child, that he completed high school, went on to college but could not manage it and dropped out and has been unable to hold a job since due to social difficulties. He comes seeking treatment.” The report goes on to describe his poor eye contact, trouble with topic maintenance and trouble understanding the examiner’s perspective. It was clear, based on the recent evaluation and current attitudes and criteria, that the patient has an autism spectrum disorder.

From a selfish perspective, this follow-up—more than 20 years later—gave me a sense of closure. The long-ago diagnosis had been accepted, at least by the young man himself, and he continues to show signs of this generally lifelong diagnosis. But I ached to know the course his family had taken in accepting the diagnosis and what help he had received along the way. Could he have done better and succeeded in his education and work activities if he had received more specialized help, such as social skills training—readily available these days but hard to find in the 90s? I don’t think the case will haunt me in the same way it had. Maybe in some new ways, though, it will.

Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.

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Wondering about autism? Help via testing child’s placenta

PLACENTA CELL STRUCTURE CAN SHOW POSSIBLE AUTISM
PLACENTA CELL STRUCTURE CAN SHOW POSSIBLE AUTISM

Wondering about autism? There’s possible help via examination of the child’s placenta. 

Talk to your child’s MD and possibly get your child’s placenta tested. If you already have a child with autism this is particularly important.  Or if ‘autism-like’ traits run in your family. 

An  ‘autism-like’ rating at birth of  the cell structure of the child’s placenta can help.  Such a rating scale may  alert  parents to intervene immediately once warning signs of autism are observed. 

What is rated concerning possible autism   is the cellular structure of the child’s placenta.

The placenta is a structure that is part of the birth process. It typically it is discarded.  The cellular structure of the child’s placenta can be examined for possible abnormalities.

What kind of abnormalities?  Cells typically do not “fold” back on themselves.  Children with a much higher likelihood of autism have a much higher “folding” than do children not likely to have autism.

What did the research examine?  The research, done by the MIND Institute and Yale University,  looked at the cellular structure of babies who have a brother or sister with autism and compared them to children who have no siblings with autism.

What did the research find?  The results were striking.  Babies with a sibling with autism, had a much higher rating of “folding” of the cellular structure of the placenta.  Whereas children who had no siblings with autism typically had ratings of “2”, children with a sibling with autism had ratings of “15”. Wow.  That is a huge difference.

 Once done, if the child has a rating that alerts the pediatrician to the possibility of autism then the parents can watch and appropriately intervene.

 

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