Tuesday, August 26, 2014

Autism and The CDC: Now What? - Binghamton Autism & Parenting | Examiner.com

Autism and The CDC: Now What? - Binghamton Autism & Parenting | Examiner.com

What's unfolded over the past few days will impact children, parents, and individuals diagnosed with autism quite possibly harder than the first day the words "Your child has autism" ever could. The effects are already being seen in the homes, schools and now the community as the first age group with autism graduates. It is said that each person with autism will need over 3.1 million dollars in a lifetime to live with adequate support and care.
This week it was announced that the CDC may have altered studies claiming there is no link between autism and MMR vaccines. Thanks to a whistleblower who came forward this week with his identity - William Thompson, Ph.D. Dr. Thompson has first-hand knowledge of the alleged cover-up.
From the Autism Action Network's John Gilmore, "For those of you who haven’t heard the news, William W. Thompson, Ph. D., a senior research scientist at the Centers for Disease Control and Prevention (CDC) has provided information to several sources alleging that he and his colleagues, who are all senior people at the CDC, altered a 2004 study to cover-up the finding that African-American male toddlers who received the Measles Mumps Rubella (MMR) shot under the age of 36 months had 340% more autism than those who got the MMR older than 36 months. The alteration to the study was allegedly done to hide the relationship between the MMR and autism. Even after the alleged deception, the study still showed that children who received the MMR at a younger age had a higher autism rate than those who received it later in life. Yet the study was marketed as showing no affect. "
A connection may not yet be made by some of the parents who are 'new to the autism scene', to all of these findings, studies and even the reason behind why some non-profits were formed to begin with. Autism is a complex disorder that should be considered neurobiological, not mental , in its origin. These 'newly diagnosed' parents too will read and be sickened, angered and then hopefully will go into action and join the parents who have been saying all along, "This is real and we need to be heard".
It seems autism may even trump race. The rate increase in autism is so high in this country that even the rate increase in this covered-up study is not the highest increased rate. It's an issue that goes across all races, nationalities and economic lines. When you have an increase rate dating back as far as 1995 showing an approximate increase of at least 900% in the rate of autism diagnoses in children aged 8 and up, it was only a matter of time before these rates would be illustrated throughout the country...and the world. But know this - these studies of the rates were published by the CDC itself and there are alleged cover-ups from the start of these autism rate studies. So now, there's a cover-up of an even higher rate? It's damage that can't be undone.
The next few days and weeks will hopefully unfold the next chapter in this long, unnecessary journey that parents of children with autism must travel. Stay tuned here.

Monday, August 25, 2014

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com

There has been a dramatic worldwide increase in reported cases ofautism over the past decade. The prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 68 children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade. Likewise, since Congress added autism as a disability category to the Individuals with Disabilities Education Act (IDEA), the number of students receiving special education services in this category has increased over 900 percent nationally. Yet, compared to population estimates, identification rates have not kept pace in our schools. It is not unusual for children with less severe symptoms of ASD to go unidentified until well after entering school. As a result, it is critical that school-based educational support personnel (e.g., special educators, school counselors, speech/language pathologists, social workers, and school psychologists) give greater priority to case finding and screening to ensure that children with ASD are identified and have access to the appropriate intervention services.
Screening and Identification
Until recently, there were few validated screening measures available to assist school professionals in the identification of students with the core ASD-related behaviors. However, our knowledge base is expanding rapidly and we now have reliable and valid tools to screen and evaluate children more efficiently and with greater accuracy. The following tools have demonstrated utility in screening for ASD in educational settings and can be used to determine which children are likely to require further assessment and/or who might benefit from additional support. All measures have sound psychometric properties (e.g., diagnostic validity), are appropriate for school-age children, and time efficient (10 to 20 minutes to complete). Training needs are minimal and require little or no professional instruction to complete. However, interpretation of results requires familiarity with ASD and experience in administering, scoring, and interpreting psychological tests.
The Autism Spectrum Rating Scales (Short Form) (ASRS; Goldstein & Naglieri, 2009) is a norm-referenced tool designed to effectively identify symptoms, behaviors, and associated features of ASD in children and adolescents from 2 to 18 years of age. The ASRS can be completed by teachers and/or parents and has both long and short forms. The Short form was developed for screening purposes and contains 15 items from the full-length form that have been shown to differentiate children diagnosed with ASD from children in the general population. High scores indicate that many behaviors associated with ASD have been observed and follow-up recommended.
The Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003), previously known as the Autism Screening Questionnaire (ASQ), is a parent/caregiver dimensional measure of ASD symptomatology appropriate for children of any chronological age older than four years. It is available in two forms, Lifetime and Current, each with 40 questions. Scores on the questionnaire provide a reasonable index of symptom severity in the reciprocal social interaction, communication, and restricted/repetitive behavior domains and indicate the likelihood that a child has an ASD.
The Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) is a brief quantitative measure of autistic behaviors in 4 to 18 year old children and youth. This 65-item rating scale was designed to be completed by an adult (teacher and/or parent) who is familiar with the child’s current behavior and developmental history. The SRS items measure the ASD symptoms in the domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behavior/restricted interests. The scale provides a Total Score that reflects the level of severity across the entire autism spectrum.
A Multi-Tier Screening Strategy
The ASRS, SCQ, and SRS-2 can be used confidently as efficient first-level screening tools for identifying the presence of the more broadly defined and subtle symptoms of higher-functioning ASD in school settings. School-based professionals should consider the following multi-step strategy for identifying at-risk students who are in need of an in-depth assessment.
Tier one. The initial step is case finding. This involves the ability to recognize the risk factors and/or warning signs of ASD. All school professionals should be engaged in case finding and be alert to those students who display atypical social and/or communication behaviors that might be associated with ASD. Parent and/or teacher reports of social impairment combined with communication and behavioral concerns constitute a “red flag” and indicate the need for screening. Students who are identified with risk factors during the case finding phase should be referred for formal screening.
Tier two. Scores on the ASRS, SCQ, and SRS-2 may be used as an indication of the approximate severity of ASD symptomatology for students who present with elevated developmental risk factors and/or warning signs of ASD. Screening results are shared with parents and school-based teams with a focus on intervention planning and ongoing observation. Scores can also be used for progress monitoring and to measure change over time. Students with a positive screen who continue to show minimal progress at this level are then considered for a more comprehensive assessment and intensive interventions as part of Tier 3. However, as with all screening tools, there will be some false negatives (children with ASD who are not identified). Thus, children who screen negative, but who have a high level of risk and/or where parent and/or teacher concerns indicate developmental variations and behaviors consistent with an autism-related disorder should continue to be monitored, regardless of screening results.
Tier three. Students who meet the threshold criteria in step two may then referred for an in-depth assessment. Because the ASRS, SCQ, and SRS-2 are strongly related to well-established and researched gold standard measures and report high levels of sensitivity (ability to correctly identify cases in a population), the results from these screening measures can be used in combination with a comprehensive developmental assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to aid in determining eligibility for special education services and as a guide to intervention planning.
Concluding Comments
Compared with general population estimates, children with mild autistic traits appear to be an underidentified and underserved population in our schools. There are likely a substantial number of children with equivalent profiles to those with a clinical diagnosis of ASD who are not receiving services. Research indicates that outcomes for children on the autism spectrum can be significantly enhanced with the delivery of intensive intervention services (National Research Council, 2001). However, intervention services can only be implemented if students are identified. Screening is the initial step in this process. School professionals should be prepared to recognize the presence of risk factors and/or early warning signs of ASD, engage in case finding, and be familiar with screening tools in order to ensure children with ASD are being identified and provided with the appropriate programs and services.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. Dr. Wilkinson is also editor of a new Volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.
If you enjoy reading my articles, you can click on "subscribe" at the top of the page to receive notice when new ones are published. You can also follow me at http://bestpracticeautism.com.

Thursday, August 21, 2014

Lee's Summit R-7 School District: Their Notes VS the Truth

Lee's Summit R-7 School District: Their Notes VS the Truth

My school district will not allow the tape recording of meetings.  I feel as though they use that to their advantage.  If you are doing everything legal, what do you have to worry about?  It would protect both sides.  Below are examples of meeting notes and my notes.  I was recently told, "You also asked about your notes being added to our Conference Notes. Our Conference Notes are the school district's record of the meetings. Your communications with us are placed in Jacob's SPED folder"
My notes:
I wanted to write a letter of understanding to make sure that we all agreed on the meeting of August 27th.  If you have any corrections please let me know within 10 days.
The Agenda was as follows:
AGENDA - JACOB TUCKER IEP - AUGUST 27, 2008, 2:45 TO 3:30
-Parental request for changes to IEP
-Transition to new classes
-Schedule meeting to write reevaluation plan
Introductions were made.  I was not given a list of the participants and was only able to make a very crude listing of who was in attendance.  There was no written attendance list filled out.
I sent the following request to the district asking for changes to Jake's Present Level of Academic Achievement and Functional Performance
During the IEP meeting we discussed that Jake's short term memory was not just information that the parents shared from outside testing, but it was also very apparent from the district's testing as well.  When I received the IEP it stated that  "Parents share that outside testing also indicates learning disabilities in written language, short-term memory, and theory of mind.  Teachers observe short-term memory weaknesses in the the classroom also."  That is not what we agreed upon and it is not completely accurate.  The district's tests also show a weakness in short term memory and we agreed that the Present Level would state that.  Also, the reason that district tests do not show that Jake has a weakness in written language is because I gave permission for Jake to be given the OWLS test and the district gave him the CASL test.  If the district had given him the OWLS test they would have the results that show that Jake has a written language deficit and that it needs to be addressed.
The present level also states that Jacob has shown improvement initiating, maintaining, and ending conversations appropriately, as well as identifying the emotions of others.  Later on the same page it states that Jacob has difficulty joining in appropriately with peers to participate in conversations, understanding how to reciprocate with peers, It also states that Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
Class participation, staying on task, understanding and following instructions, completing and turning in work on time, organization, self-advocating for make-up work, taking notes, expressing himself through lengthy forms of written expression, test-taking skills, understanding the emotions of peers and teachers, and general social skills.  
Jake's psychiatrist and I do not believe that Jake has made any progress in the area of conversations or in identifying the emotions of others.  Jake's psychiatrist has a practice of teenagers with autism and it is his opinion that Jake is not on the high end and that he is too affected by his autism to be able to be doing what the present level states.
I would like the sentence, "His forgetfulness or memory is reported to also be affected by inattention."  That leads to the impression that he does not have an issue with his short term memory.  I have stated above why I believe that he has an issue with short term memory and I believe that his IEP needs to address this fact.
Under Assistive Technology you state that Jake has been resistive to carrying the Quick Pad to classes.  He did not believe that it worked.  It was kept in his 7th hour class and that teacher had to figure out how to use it each time that it was taken out of the closet that it was kept in.  Therefore, Jake believed that it did not work.  I stated this at the IEP meeting and wish to have that in the present level instead of saying that Jake was resistive to using it.  Finally, that same teacher let Jake use a class computer, which I had suggested in middle school, and told Jake that "I have figured out a loophole around your mom's rules."  That is unacceptable to me.  This same teacher admitted in the IEP meeting that she had said this.  Jake came home and told me that I was making things harder for him because that is the impression that he received from this teacher.  My advocacy for Jake should never be discussed with Jake without my permission and should never be used as an excuse to find loopholes.  
Under strengths it states that Mrs. Tucker shared that she does not feel that Jacob has any strengths.  That is taken totally out of context and is completely inaccurate.  I was asked what strengths I felt Jake had for his future.  I said that he didn't have any strengths that would lead to him living an independent "normal" life.  I did state that Jake is great at math and reading.  But, he was not given the tools to live within society because the district did not address his social issues when he started in the district at the age of 5.   I want that statement removed.
We didn't discuss Goal number 6 at the meeting.  It is not appropriate to change that goal without discusses it.  Your letter states, "You will notice that Goal 6 form the draft IEP has been changed, because of our discussion on the difficulties with accurate measurement.  Instead we will focus on self-advocacy in helping Jacob build better habits in requesting make-up work since it is listed in the present level as one of the ways Autism affects Jacob in the general curriculum."
On the Modifications and Accommodations page I specifically stated that I was not in agreement to As Needed being used.  That is defined as to be determined by the special education and/or regular education staff and that is leaving an important party out of the decisions.  I do not believe that it is appropriate to use that term on this IEP. 
Under Regular Education Participation it states that Jake is rejected from less restrictive options because of lack of previous progress in regular education with modification, and with the use of supplementary aids and services.  Jake has not received services or modifications.  What does this mean?  It also states that student's diverse learning styles require alternative instructional environment and Jake is in a regular education classroom.  Finally, it states that student requires highly structured, small-group setting, and individualized instruction.  Once again, this is not taking place.  Jake is in a classroom of over 25 students with two teachers.  That is not small group or individualized instruction.
Finally, we discussed a social skills class and my psychiatrist and I believe that it is totally inappropriate for Jake.  He requires one-on-one instruction from a person that is HIGHLY trained in his disability.  It is necessary for the person that is giving Jake services to COMPLETELY understand his disability so that they can understand the difference between one sided conversations and real conversations.  Jake has made no progress in this area and has very little time left to make some progress.
The following is what we resolved at our August 27th meeting.
The district highlighted two sentences on his present level that state, "expressing himself through lengthy forms of written expression," and "writing/editing and writing complexity".  These are under Jacob's disability affects his functional and academic involvement and progress in regular education curriculum in the following manner:
The district said that they believed that addressed Jake's written language deficit and asked if I agreed.  I said that I didn't, but we would be retesting Jake soon and it would all have to be rewritten anyway, so I would leave it for the sake of argument.
As for Jake's short term memory issue, they added a sentence that stated "District testing also indicates short term memory weakness."
They removed the statement "His forgetfulness or memory is reported to also be affected by inattention.
As for the issue about the assistive technology, they added a sentence that stated, "Mrs. Tucker believes that this was because he believed it did not work."
I told the team that I disagreed with that statement.  The device didn't work in Jake's mind and that's why he didn't want to use it.  He was not resistive to carrying the Quick Pad to classes.  He was resistive to working with a machine that didn't work.  The team refused to take that out.  I was told that I am the expert on Jake at home and the district is the expert on Jake at school.
I would like to state that I find that offensive and incorrect.  If the district was an expert on Jake at school all of his teachers would be HIGHLY trained in his disability.  I wouldn't have to go to meetings and explain Jake's actions, issues, etc if the team at school was an expert on my son.  If the team were an expert on my son, they wouldn't have put him into a class that A) he was not qualified for and B) was totally inappropriate for a student with autism.  If the team were an expert on my son they would not have recommended an art class for a child with dysgraphia or a music class that he surely would have been overwhelmed in.  This is not the first time that the team has suggested a class that was totally inappropriate for Jake.  It was disastrous before and I'm quite sure that it would have been again if Jake had qualified for the 1st hour class.
Under strengths it stated that Mrs. Tucker shared that she does not feel that Jacob has any strengths.  That was changed to "Mrs. Tucker feels that Jacob does not have any strengths that would lead to him living an independent "normal" life.  She does feel that he is great at math and reading."
Under reasons for rejection of less restrictive options:
The following were removed:
Lack of previous progress in regular education with modifications, and with the use of supplementary aids and services.  Jake has only bee in regular education with no modifications, so that statement was completely inaccurate.
Requires highly structured, small-group setting, and individualized instruction.  While that would be the ideal setting for Jake it was rejected and has not been offered.  I was told that Jake's only options were regular ed or life skills.
The following were left and other was modified:
Student's diverse learning styles require alternative instructional environment.
Other:  Highly structured small group setting helpful one period per day to assist with organization support reg ed coursework.  I would like to know the teacher to student ratio in that class. Also, I would like to know if that teacher has been trained in autism and all that it entails.
We did not discuss goal number 6.
We did not discuss what social skills training Jake would receive and if that person would be highly qualified to work with Jake.
We finally discussed the accommodations for Jake.  I do not like to use the term "AS NEEDED".  On the sheet it states, "AS Needed is defined as to be determined by the special education and/or regular education staff."  We have already determined that the staff is not highly trained in Jake's disability and to leave such a decision up to them would be neglectful.
Small group testing was changed to "Access to small group testing with rephrasing of directions."  We had a very long discussion on what that meant.  Joy Rose stated, "Historically Jake has refused to take tests in a small group and it resulted in meltdowns and shutdowns."  I would like to know where that information came from because it is totally inaccurate and should not be in Jake's file. 
Jake always took tests in small groups at Prairie View.  It was no big deal and it lead to higher test scores.  When he entered Pleasant Lea they did not give him tests in small groups.  His IEP stated that they were supposed to.  Then they finally agreed to do it, but they asked if him if he wanted to.  Most times he said no.  That is not a refusal.  That is a child being given a choice and choosing. 
Had the district implemented his IEP throughout his ten years in this district, this would not be an issue right now.  I have no problem with Jake taking tests in the classroom as long as he understands what the test is asking of him and he is able to take it.  Making a child sit in the hallway is not my idea of small group testing and that is what has been offered on more than one occasion. 
We discussed that Jake has been tardy to a few classes, but that the teachers haven't marked him tardy.  Jake does not visit in the halls or play around.  He simply walks from class to class and sometimes the distance is too far for him to make it in time.  Allow to leave class few minutes early was changed to daily for that reason.
We discussed Jake's issues with school and how much he hates it.  I told the team that he is under a great deal of stress just coming to school.  It overwhelms him.  He can't sleep at night.  These are characteristics of most children with autism and it is another example of how the district is not an expert on Jake.
Jake is having some issues in math.  The teachers say that he is refusing to work.  I talked with Jake and he told me that he is so tired he just can't concentrate.  We will speak to his psychiatrist about the stress and lack of sleep. 
We are scheduling evaluations for Jake to be done in October.  I sent a list to the district that was given to me by an expert in educational testing.  The district didn't agree to those tests yet and stated that they couldn't give him a test that they don't already own.  It was stated that Jake didn't need an IQ test because they already know that he is smart.  I disagree and feel that past testing by the district has been incomplete and didn't find the deficits that he has and that his education has suffered from it. 
Thanks for meeting with us and for the opportunity to meet Jake's teachers and try to give them a better picture of Jake.
Their notes:
Psychiatrist appointment Sept. 17. On clinical trial until this date then starts seeing psychiatrist on patient bases. Another appointment in October.

Joy went over Notice of Action which shows changes being made to IEP.
Taking off abilifymedication Sept. 17. He will have more anxiety. Will be off of for at least a 3 week trial. The team agreed that it would not be in Jake's best interests to write a reevaluation plan and pull Jake out of classes for testing right after the time his meds.
Change Sept. 17. Joy Rose told Mrs. Tucker that she would e-mail her a list of some dates that could be options of times to meet towards the beginning of October.

Curtis wants to know what reeval. is about. We do 7 areas. Test that will give us information for programming.

Specific testing in email. Is that the whole list? No. Joy told Mrs. Tucker that the district doesn't have to go out and buy specific tests if we have something comparable.
We will look at areas that need to be measured. Written language seems to be big concern for Sherri. Joy Rose told Mom to send any more specific requests to her so that she can check to see if we have that instrument or something comparable before we meet to write evaluation plan.

Parents given copy of Procedural Safeguards and Notice of Action.

Teachers were told that a copy of Amended IEP would be in their mailboxes in a day or two to replace the original IEP with.

Math teachers shared some concerns that Jake is verbally negative at times about his abilities and asked parents if they had any ideas as to how to help with this.
Going to do an observation of his route between 1 st and 2nd hr. to see ifhe is taking and knows the shortest route. Allow to leave class few mins. early Daily.

Reasons for Rejection of LRO: See *. Clarified the reasoning behind why he is in a Resource Lab. Parents okay with.

Teachers shared that they have concerns because so far Jake has been unwilling to use his laptop. No long writing assignments have been done. Jake has preferred to handwrite shorter assignments. Parents have OKed that on anything other than lengthy ones. Mr.
Smith said he had a lot of short quizzes in class and family agreed that he could stay in class and write answers unless Jake felt he needed assistance.

We discussed the fact that his unwillingness to use the Laptop is why he does not have his assignments written down. Although this is our goal, team decided to use paper assignment sheet until we can help him form this habit.

Discussed the fact that if Jake is late for class, it is not because he is talking to others in the hallway. So, we will need to cut him some slack.

Joy will make corrections to IEP and get in mail in next few days.

Will use Jacob Tucker Planner Sheet. Teachers fill out. We will look at gradually moving him from this to the planner sheet on his H drive. Folders for each class on his H drive. Check with tech. to see if teachers can put assignments in his H drive.

Get Jake used to using computer and then look at One Note and or other program. Some difficulty and confusion in using One Note.
Sits in the shower at home for 30 mins. after school to unwind.

Teacher provided notes - Jake tends to not pay attention after notes are handed to him in Math. Sherri ask if Jessi was sure he wasn't paying attention? Based on his answers to direction questions he isn't listening. Stacey suggest give him notes with some missing words here and there. Jessi will check with him to see ifhe is hungry. Isn't eating breakfast. He is bringing a snack but not sure when he's eating it. He doesn't see Geometry as math.

Curtis - If you put him on the spot in front of other people he will shut down.

Did very well listening to Peachee in ICP today.

Overall, teachers feel like he has transitioned well to this school year. He is focused and contributes in class many times more than others.

If frustrated or doesn't know what's going on will say he doesn't know what's going on.


Present: Joy Rose, Sherrie Tucker, Curtis Tucker, Rick Smith, Stacey Martin, Kim Sterne, Dawn Payne, Cindy Britt, Gerald Clevenger, Jamie Argotsinger, Jessi Ramsey, Janalee Byers, Michelle Rees, Christine Peachee, Duane Fleck, Joyce Jackson, Kelli Wilson, Deanna Thorne

After introductions, Joy Rose shared the agenda and explained that the team would be considering parental requests for changes to be made to the IEP that had been shared with them before school started.
See Draft of Proposed changes for Amendment:
Page 2 IEP last paragraph * written in, yellow highlight on pg. 2 show written language.
He also has 2 written language goals.
Sherri - he definently shows a written lang. deficit. It shows in Present Level.
Sherri - I guess will just wait til you do the right testing this time and it shows up.

Assistive Tech. - Change, been resistive to carrying, to appeared resistive to carrying. Sherri questioned whether or not his appearing resistive to carrying his Quick Pad should be in there since she feels it is only because he didn't believe it worked. Joy Rose told her that we may just have to meet each other half way on this as for whatever reason, our staff observations indicate that he appeared resistant to carrying it.
Sherri believes Jacob does not have any strengths statement changed to reflect for transition., see PLAAFP at bottom.

State/District Assess. Mark out tests red if not measuring reading because of changes to state testing this year. That won't be allowed.

Mods. - Do parents want teachers to push Jacob to small group testing or give him the choice to stay with his class. Mom wants to talk to Jake. She will get back to us.
Small group testing has to do with the noise around him not being sure what he understands what's being ask. Mod's in question were changed to Daily with some change in wording on some. Joy Rose explained to parents that we do not want to frustrate Jacob by forcing him to leave the class for testing ifhe feels that he does not need to go as then he sometimes shuts down. Mr. Curtis agreed that Jacob does not like to have attention drawn to himself.

English - Quizes every Friday. Okay to ask him what he wants to do. Discussed his difficulty explaining how a person felt in a story.
If he takes test/quiz and does fine then okay. Ifhe doesn't do well investigate why. May need small group/indo Retake.
Use computer on extended writing assignments. Anything more than 5-8 sentences.
Dawn Payne ask about some of the work in English. Showed examples. Mom was okay with them.
Special spot in classroom for Jake's supplies - Math is working out well. It's working perfectly.

Lee's Summit High School

400 S.E. Blue Parkway Lee's Summit, Missouri 64063-4399 (816) 986-2000  FAX (816) 986-2095

September 5, 2008

Dear Sherri,

In response to your e-mail of August 29, please find attached a copy of our Conference Notes. The participants are listed. Hopefully it will be helpful to you to have to compare with your notes. If you are not comfortable with Goal Number 6 now that you have had time to consider it, please let us know what you would like to see focused upon.

Thank you also for sending us information on the reevaluation you would like to see. We will look forward to seeing you October 6th. Per your request, I will e-mail you our suggestions utilizing your input on an evaluation plan. We can then make the final decisions on areas to be evaluated and instruments to be used as a team when we meet. I might suggest having a smaller team, utilizing the members that are required to be legal, when we write the evaluation plan. I would feel it is more important to have as many of the teachers present as possible when we go through the results of testing and look at the implications for programming. Would you be comfortable with that?

Respectfully yours,

Joy Rose SPED Process Coordinator

Sunday, August 3, 2014

Plain Talk About PDD and the Diagnosis of Autism

“Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.” ~ Bernard Rimland, Ph.D. Autism Research Institute

For sure you want to know if it is or isn’t autism so you can secure appropriate therapies and placement. The diagnosis of autism (which is what is assumed today if a child has a diagnosis of PDD or PDD NOS) will most likely lead to therapies and placement that are appropriate for autism.

There are other diagnosis that may be more appropriate for the child to secure appropriate therapy and placement for the best prognosis. For example, due to apraxia or dyspraxia also being multifaceted communication impairments, most apraxic/dyspraxic children could fall into the PDD or PDD NOS diagnosis depending upon where they are diagnosed. When this happens however instead of a focus on speech and motor planning therapies, along with if needed sensory and strengthening therapies, all of which could be appropriate for an individual with apraxia or dyspraxia, the focus would most likely be more on behavioral therapies such as ABA. However ABA therapy which is typically appropriate for autism, is highly inappropriate and can even be detrimental if used to address the motor planning deficits of an apraxic or dyspraxic child.

For this reason, please don’t accept PDD or PDD NOS unless you are sure it’s autism, and if your child has mild autism, just say it’s mild autism. So I agree 100% with Dr. Rimland. Here’s one of my favorite articles on this by him: Bernard Rimland, Ph.D.

Plain Talk about PDD and the Diagnosis of Autism

Plain Talk about PDD and the Diagnosis of Autism
Written by Bernard Rimland, Ph.D. Autism Research Institute
Autism Research Review International, 1993, Vol. 7, No. 2,

Let’s start with the obvious: the label PDD (Pervasive Developmental Disorder) is a poorly understood, uninformative, confusing, disliked, and should be abandoned. The sooner the better. In fact, it should never have been adopted in the first place.

Over the years I have talked and corresponded with thousands of parents who have told me their child “has PDD.” I often respond by saying something like, “Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.”

If any parents have been distressed by this blunt, unexpected harangue on my part, I would be surprised. The vast majority seem relieved to at last hearsomeone giving them straight talk about PDD. Parents live with their child 24 hours a day, 7 days a week. These parents realize that their handicapped child will in all likelihood be the central focus of their lives for the rest of their lives. They want to know the truth, insofar as the truth is known. They don’t want to be misled or misinformed by sugar-coated verbiage masquerading as informed fact. If we don’t know the right label for their child, let’s tell them that up front, rather than hide our ignorance behind the mystique of a pseudo-scientific label, presuming knowledge we don’t have, like PDD.

I am very much aware that creating suitable names for “psychiatric” or “behavioral” disorders is a difficult and thankless task. Look at what we have now: Schizophrenia is Greek for “split mind.” Mental retardation is a euphemism for low intelligence. Hyperactivity merely describes what everyone knows too well–the person is too active. Autistic means “day dreaming.”

Until we know what causes these things we are stuck with using a somewhat descriptive term to characterize them. I’ll agree to that, as a matter of necessity, but where does PDD come in?

The passage of time has led to widespread usage of the terms, schizophrenia, mental retardation and autism. There is little or no likelihood that PDD will be afforded similar acceptance.

In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we summarized an excellent statement, signed by 16 prominent European and U.S. professionals in the field of autism, titled “Autism is not necessarily a pervasive developmental disorder.” The authors noted that although the term PDD was introduced well over a decade ago, it has not really caught on, and is unfamiliar not only to lay people, but to the politicians and administrators, most of whom–thanks probably to Rain Man–are aware of autism. The article observes that the term “pervasive” is particularly inappropriate, since severely retarded persons, many of whom have chromosomal defects which affect every cell in their bodies. Autism, they point out, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.

Quite apart from the misleading and inappropriate semantics of the term PDD is a practical matter: autistic children and adults unfortunate enough to have the PDD affixed to them have often been–and continue to be–excluded from programs and services designated for those with autism, and which would benefit them.

Clearly, the PDD designation, along with its cumbersome bureaucratic baggage (i.e., PDD-NOS: “Not Otherwise Specified”) should be relegated to the Archives of Failed Attempts, where it will have plenty of company, while we go on about our business.

There are many more children with autistic-like disorders than there are children with autism itself. When I founded the Autism Society of America in 1965, I urged, and my recommendation was followed for many years, that all ASA stationery, brochures, and other printed materials carry the wording “Dedicated to the welfare of all children (later ‘children and adults’) with severe disorders of communication and behavior.” The need for an encompassing title for this group was evident even then.

Of the various labels that have been suggested, the one I like best is “autistic spectrum disorder,” which, I believe, was first suggested by Wing and Gould in 1979. The advantages of this term are obvious. For one, it acknowledges that there is a range of problems and of subtypes, and it does not pretentiously claim to be based on knowledge that is not yet available to us.

At the Autism Research Institute we have been working for over a quarter of a century on the development of more objective scientific means of diagnosing children with autism and related disorders.When my book Infantile Autism was published in 1964, it contained, as an appendix, a checklist designated “Form E-1″ (E for experimental). Within a year E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute has collected over 16,800 E-2 forms, completed by parents of autistic and possibly-autistic children in over 50 countries. (Form E-2 is available in eight languages.)Form E-2 is designed for completion by the child’s parents, and asks questions about the child’s early development and about language and behavior through age five an a half. (After age five an a half, autistic children begin to change in many ways, so it is better to rely on behavior prior to that age.) Once we receive a completed E-2 form from a parent or professional, we enter the data into our computer, derive a score which tells the child’s position to the continuum ranging from “classical autistic” at one end to “not autistic” on the other, and mail a report to the sender. We have performed this service, free of charge, for well over a quarter of a century for thousands of parents and professionals world-wide. (Readers of the ARRI are invited to request E-2 forms and avail themselves of this free service.)

A major purpose of this effort is to collect data for statistical analysis. There is no doubt that the “spectrum of autistic disorders” contains numerous subtypes, some of which are large enough to be identified by as our database of almost 17,000 E-2 Forms. We are already aware of some of these types, such as classical–Kanner’s Syndrome–autism, fragile X autism, Rett syndrome, and candida-caused autism. My colleague, Dr. Stephen Edelson and I are conducting factor analyses and cluster analyses of the E-2 database, in order to identify and characterize these and other subtypes. The database is large enough so that subtypes identified by cluster analysis within one segment of the database can be confirmed by cross-validation on E-2 data which was not used in the original identification of subtypes.

As this work advances we will report on progress in the ARRI, and in other places. Subtypes identified through this means of statistical analysis can be validated in a number of ways, independent of the E-2 database, including family history variables, clinical laboratory tests, and differential responses to drugs and other treatments. It is thus hoped to place the diagnosis–as well as the treatment–of “autistic” children and adults on a more scientific basis. I believe that progress in this field will proceed faster if we rely on the identification of subgroups through the analysis of statistical data, rather than on constructs based on speculation, conjecture, surmise and subjective impressions.
In the meantime, let’s get rid of “PDD!”

This article appeared in the Autism Research Review International, Vol. 7 (2), 1993. The Autism Research Review International is a quarterly newsletter published by the Autism Research Institute (4182 Adams Avenue, San Diego, CA 92116, U.S.A.).