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Hi I thought this might be a good way to welcome new members on the boardand help out other members by putting all the information together and hopefully have everything at the finger tips for the parents, caregivers, family members etc of a loved one newly diagnosed or anyone just searching for information that need some answers. Feel free to add other information you may have.. I know I haven't even begun to cover everything! But my hope is for it to help all who are searching for answers!

CLICK HERE TO START http://www.autismtoday.com/commercial.htm WATCH the commercial.... (Thanks Cyndie)

Have a fear or wondering about autism? Here are some informative links....

http://www.autism-pdd.net/autism-symptoms.html

http://groups.msn.com/TheAutismHomePage/startpage.msnw

http://www.autism-biomed.org/poster.htm

http://www.msnbc.msn.com/id/6895311/

http://www.cdc.gov/ncbddd/autism/actearly/milestones_3months .html

http://www.neurologychannel.com/autism/diagnosis.shtml

http://www.raisingdeafkids.org/special/autism/index.jsp

http://autism.about.com/cs/whatisautism/l/blcharac.htm

http://www.cincinnatichildrens.org/health/info/mental/diagno se/autism.htm

http://www.autism.about.com/

http://www.cdc.gov/ncbddd/autism/

http://www.childbrain.com/pddq5.shtml

http://psychology.plebius.org/disorders/autism/4/diagnosis/

http://www.jeena.org/autism/tests.htm

http://www.nationalautismassociation.org/treatments.php

http://www.firstsigns.org/treatment/dx.htm

What to expect from an Evaluation     http://www.fetaweb.com/help/eval.expect.meyer.htm

AND   http://www.pedneuro.com/services.shtml  (thanks Gabu)

Wondering if it could be autism? Here are links to information about some onlne tests.... The tests are not ment to diagnose but to act as a guide and to give you information to discuss with your child's Dr.

http://www.childbrain.com/pddq6.shtml

http://depts.washington.edu/dataproj/chat.html  CHAT checklist

http://pediatrics.about.com/od/autism/l/bl_autism.htm

http://autism.about.com/cs/medicaltreatments/a/txchecklist.h tm

http://home.isoa.net/%7Enitetrax/cars.htm

http://www.asaoakland.org/chat.htm

http://www.neurotransmitter.net/pddst2.pdf

http://www-personal.umich.edu/%7Epdpatel/DSM%20files/ABC_che cklist.pdf

http://www.neurotransmitter.net/autismscales.html

http://www.patientcenters.com/autism/news/diag_tools.html

http://www.aspires-relationships.com/articles_dx_assessment. ...htm

http://www.autism-pdd.net/forum/forum_posts.asp?TID=59&P N=4

Adults with Aspergers - What about you?

http://www.iidc.indiana.edu/irca/generalinfo/standardtests.h tml

http://www.forepath.org/

DSM IV CRITERIA FOR Childhood autism,  Asperger's syndrome, Rett's disorder, Childhood disintegrative disorder, PDD NOS  http://www.childbrain.com/pddq3.shtml

AFTER THE DIAGNOSIS TESTING http://www.greatplainslaboratory.com/autismrec.html#top

The Do's and Don'ts after a diagnosis A print out for your family�s and friends  (Thanks Karrie)

Looking for information and ideas? Here are some links to help you....

http://www.support4hope.com/autism/autism_adults.htm

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Yellow Pages for Kids with Disibilities
Separate listings for each state and territory, Disability information groups, Evaluators, Tutors, Support groups, Advocacy groups, and State agencies...  

Advice for Parents of Young Autistic Children
This paper is geared toward parents of newly diagnosed autistic children and parents of young autistic children who are not acquainted with many of the basic issues of autism...
------------------------------------------------------------ ---------------------------
 
Interview with Mitzi Waltz: Autistic Spectrum Disorders. Author-advocate Waltz, now studying at the Autism Research Unit, answers questions about the increasing number of diagnoses, potential link with immunizations, autism and genetics, current treatment research, and the impact on families.
 
  • Autistic spectrum disorders
  • Books by adults with ASDs
  • Children's books
  • Websites about ASDs
  • General disability
  • Health care and insurance
  • Parenting and siblings
  • Special education
  • Childproofing
  • Special-needs clothing
  • Specific therapeutic interventions
  • Transition planning and adult issues

Support and Advocacy

  • National autism/ASD organizations
  • Online support groups
  • Related conditions
  • General special needs
  • Legal advocacy

PDD Connections WebRing
This is the home page for a WebRing (web sites linked one to another, as in a circle) designed to help people find useful information about pervasive developmental disorders. Topics include a definition of autism, pervasive development disorders, and related resources. This WebRing is helpful for anyone living with, or trying to understand a child with ASD.

  • Diagnostic Tools
    • The Autism Research Institute's Form E-2 Check List
    • The Childhood Autism Rating Scale (CARS).

    Research and Testing Facilities

    Medication Reference
    Describes the medications that may be prescribed for ASDs.

    Supplement Reference
    Great resource for nutritional supplements and herbal remedies pertinent to ASDs

    Autistic Spectrum Disorders is a new book by Mitzi Waltz, a revised and updated edition of Pervasive Developmental Disorders

    The Diagnostic Merry-Go-Round. The diagnosis of ASD is usually a frustrating process of diagnosis by elimination, after a range of specified conditions in the autistic spectrum and related conditions are ruled out.

    Getting a Diagnosis: Starting with a Pediatrician. The journey to a diagnosis of ASD can begin in different ways, but for most it starts in a pediatrician's office.

    Tips for Daily  Family Life. There are a lot of things about raising a child with ASD that teachers, therapists, and doctors don't know much about. Hints from parents about daily life, including tips on haircuts, bathing, clothing, selecting furniture, and safety precautions.

    Record Keeping. Some advice on what records to keep, and how.

    Stresses on Families. This article shares some problems of families under stress and methods for coping. Problems addressed include withdrawal or overinvolvement by a parent, effect on siblings, isolation, finding the right therapist, separation and divorce, single parents, non-custodial parents, and adoption and foster care.

    Parenting: Disciplining a Child with PDD. Whole families are affected by PDDs. This article focuses on discipline issues: how do you respond when "normal" parenting advice may not apply?

    Direct and Indirect Financial Support for Families. Some programs are available that may provide you or your family with financial support. Even though the amounts may be small, they may allow you to stretch already strapped resources.

    After an IEP is in Place: Educational Issues. Your job in helping your child become educated in school doesn't end once you have an educational plan in place. This article addresses issues such as: monitoring progress, extended school year services, dealing with behavioral dilemmas, suspension and expulsion, 504 plans, taking on the school system, private schools, homeschooling, and transition planning

    ------------------------------------------------------------ -----------------------------

    Wondering about the differance in ASD's? Here are links to help guide you....

    Low / High Functioning Autism Please Read

    http://www.msnbc.msn.com/id/6895447/

    http://info.med.yale.edu/chldstdy/autism/aspergers.html

    http://www.answers.com/autism+spectrum+disorder&r=67

    http://www.wrightslaw.com/info/autism.index.htm

    http://www.answers.com/topic/pdd-not-otherwise-specified?hl= pdd

    http://www.answers.com/topic/pdd

    http://www.answers.com/topic/pervasive-developmental-disorde r?hl=pdd

    http://www.drspock.com/article/0,1510,5473,00.html?r=related

    http://www.autism.org.au/UNDERSTANDING%20DIAGNOSIS.htm

    http://www.brighttots.com/Childhood_Disintegrative_Disorder. html

    http://www.udel.edu/bkirby/asperger/aspergerscaleAttwood.htm l

    MEDICATION & SUPPLEMENTS

    Common Medications Used To Treat Autism

    Medications Information

    http://pediatrics.about.com/od/autism/a/05_autism_rx.htm  - different treatments & Meds

    Risperdal and the Aggression of Autism

    Risperdal

    Clonidine

    Supplements

    Want the facts or some general info? Here are links for that...

    Autism In The News LINKS Galore!

    http://www.medicinenet.com/script/main/forum.asp?articlekey= 13881

    http://www.parents.com/articles/health/5716.jsp?page=1

    http://www.communityinclusion.org/publications/pddbook.html

    http://maapservices.org/MAAP_Sub_Find_It_-_PDD_Articles.htm

    http://groups.msn.com/TheAutismHomePage/echolaliafacts.msnw

    http://autism.about.com/cs/whatisautism/a/autismfaqtwo.htm

    http://www.insidethebubble.co.uk/articles.php

    http://www.autismweb.com/

    http://www.irsc.org:8080/irsc/irscmain.nsf/cat?readform& cat=Autistic+Spectrum+Disorders&type=Web+Pages

    http://www.msnbc.msn.com/id/6895311/

    http://www.msnbc.msn.com/id/6895447/

    http://www.ausm.org/Information/General/testinfo.htm

    http://www.autism.org/adviceforparents.html (Thanks Jean)

    http://www.hhrehab.org/childservices/autismservices/Default. htm

    http://www.rainbowpediatrics.net/faq/7.21.html

    How Can A Parent Help?

    Extraordinary Parenting - Autism 

    Cartoons shed light on autism

    Pathways to Progress .....

    Explaining A Diagnosis AND  how to tell others about the diagnosis

    Sibling Help -- http://www.autism.org/sibling/sibneeds.html

    The Discovery Of "Aspie" Criteria

    Savant Abilities. (Thanks Sarah)

    Head Circumference / Autism

    http://www.cheapceus.com/Autism_05.html   (Thanks Jean)

    Autism / Mercury / Metals / Chelation

    http://www.askdrsears.com/faq/mc3.asp Can MMR be given separately?

    http://www.autismmedia.org/media1.html where to find the MMR separate

    Banning Mercury In Vaccines  

    support removal of thimerosal from shots

    http://www.thehealthcrusader.com/pgs/excalibur/article_2005_ 03_17_1401.shtml  Scroll 2/3 way down Thimerosal Is Still In Vaccines

    And Just a reminder........ School Vaccines NOT Mandatory

    Reduce Your Stress Level

    Potty Training

    Play

    http://autism.about.com/cs/adadsjournal/a/movingjournal.htm  moving tips

    Speech Delays  and Communication

    COMMON CO-OCCURRING CONDITIONS IN AUTISM Pages 1 2

    Changes in Routine Equals Changes in Behavior

    Behaviors

    Behavior modification controlling tantrum

    Autism Service Dogs of America

    Autism Business Cards 4 Public Awareness

    Calming Activities

    SIBLINGS OF INDIVIDUALS WITH AUTISM/PDD

    Find HARD TO FIND T shirts here...  http://store.yahoo.com/stylinonline/

    SAFTEY ITEMS

    Safety Stickers - http://www.unlockingautism.org/detail.asp?PRODUCT_ID=safetys ticker

    Home Door / Window Alarms

    http://www.homesecuritystore.com/ezStore123/DTProductList.as p?p=2_1_1_1_0_0_118&engine=adwords!276&keyword=%28 do or+alarms%29&match_type =

    http://store.yahoo.com/nextpowerusa/fial8wiwidoa.html

    http://www.janet1.freeuk.com/

    http://www.spymaster.com/home.door.protection.html

    http://www.globalsources.com/manufacturers/Door-Alarm.html

    Kid Alarms

    http://www.ion-kids.com/ 

     http://www.brickhousesecurity.com/childsafety.html

    http://shopping.yahoo.com/search;_ylc=X3oDMTFjdDZpbGpvBF9TAz k2MDc5MjYwBGsDY2hpbGQgbG9jYXRvcgRzZWMDa2IEc2xrA3RpdGxl?p=c hi ld+locator

    http://www.safetydefenseproducts.com/childguard.htm

    http://www.itave.com/smart_guard.html

    911 GPS Child Watch

    http://www.hardwares.globalsources.com/si/6007000636832/yste ch.co

    Medical Alert

    http://www.mypreciouskid.com/medical-id-bracelet.html

    http://www.lifejewelry.com/

    http://www.hahoriginals.com/catalog/default.php?cPath=66_63& amp; amp; amp; amp; amp;osCsid=7b511578ed6fdb5be67184da2d0a4bed

    http://www.laurenshope.com/

    http://www.n-styleid.com/

    http://www.medicassist.com/

    http://www.medicid.com/

    http://www.medicalert.org/home/Homegradient.aspx

    http://www.bindependent.com/hompg/bi/bindep/store/aisles/gai ncontrol/medmanageprod/idjewelry.htm

    http://www.jewelbasket.com/medical-alert-id-bracelets.html

    http://www.americanmedical-id.com/home/?usersession=931a85b3 5c9beea0b42f659b165dcda6

    http://www.medicalert.org/home/Homegradient.aspx

    School related

    Protection and Advocacy

    Special Ed rights for parents and Kids

    http://www.bbbautism.com/vol_2_issue1_iep.htm - ***WONDERFUL LINKS!!!!

    Writing IEP�s For Success

    http://www.dredf.org/

    www.wrightslaw.com

    http://wrightslaw.com/info/esy.index.htm  - Extended School Year

    Building a Better Homework System

    Autism Education Network

    A Guide To Letter Writing

    What Is An IEP?

    MultiFactored Evaluations

    Whose IDEA Is This?

    10 common IEP mistakes

    Specific Disability / Class accommodation

    Instructional Methods / Accomodations

    Programming / Teaching

    Tips for Teachers

    Back 2 School Tips 4 Special Needs Kids

    Advocating

    iAbida Special Needs Education

    Paraprofessionals

    Rapid Prompting Method severely autistic

    http://millermethod.org/

    http://www.autismtreatmentcenter.org/contents/about_son-rise /what_is_the_son-rise_program.php

    Activities to Improve Learning through ..

    Fun Educational Activities &More For Kids

    Teaching / Learning Related

    http://www.elliecards.com/  - elliecards� are a complete set of picture cards intended as an augmentative communication system for young children with special needs. Designed to be used for children with autism, speech disorders, and various learning disabilities, elliecards� are an invaluable learning tool for parents, therapists and educators.

    Created by parents who had little success using other picture card systems on the market, this product uses photos that are realistic to everyday life, come laminated and completely assembled in an easy-to-use binder.

    http://www.autismteachingtools.com/

    http://www.otawatertown.com/toylist.html

    http://www.do2learn.com/

    BEHAVIOR RELATED

    http://rsaffran.tripod.com/aba.html

    http://www.christinaburkaba.com/History.htm

    http://www.brighttots.com/aba_therapy.html

    http://www.redandgreenchoices.com/about.htm

    http://www.bia4autism.org/

    http://www.wrightslaw.com/info/autism.methods.compare.pdf

    http://www.polyxo.com/aba/

    http://www.easychild.com/parentingclick2.htm

    http://www.wrightslaw.com/news/2002/jaynes.tarkan.nytimes.ht m

    Speech Related

    Signing   (Thanks Anne)

    Pecs Info.... (Thanks Gabu)

    http://www.polyxo.com/visualsupport/pecs.html

    http://www.pecs.com/

    http://www.tacanow.com/pecs.htm

    http://www.cesa7.k12.wi.us/sped/autism/assist/asst10.htm

    Echolalia - http://www.autisticsociety.org/modules.php?name=Encyclopedia &op=list_content&eid=36

    Echolalia - http://www.answers.com/topic/echolalia

    Echolalia - http://www.utdallas.edu/~rollins/A_I/echo.pdf

    ADOS Facts - http://www.wpspublish.com/Inetpub4/w090205.htm

    PRT - http://autismone.org/AutismOne2004/presentations/45%20Koegel %20Robert%20and%20Lynn%20Koegel%20-%20sent.doc

    PRT - http://www.autismteachingtools.com/page/bbbbfg/bbbbqc

    PRT - http://www.dbpeds.org/articles/detail.cfm?TextID=229

    Testing Info - http://www.ausm.org/Information/General/testinfo.htm

    Vocabulary Videos for Autistic Toddlers
    The Vocabulary Builder video series has proven to be very effective for toddlers with language delays due to autism. Click here to read what parents have to say about these videos.
    Sponsored by: http://www.babybumblebee.com

    ABA Videos - This service incorporates the strategies of video modeling and Applied Behavior Analysis into an educational tool to be used by children, parents, educators and Paraprofessionals in the form of video. Video modeling provides children with the skills to create, improve and enhance receptive and expressive skills.

    TEETH GRINDING

    http://www.dentalarticles.com/reader/pt12.htm  

    http://www.ncrdoctors.com/ncr_helps_conditions/ncr_articles_ teeth_grinding.html

    http://www.doctorndtv.com/topics/detailtopics.asp?id=506

    This is questionable.... http://www.autism.org/rett.html

    FEEDING ISSUES

    Sensory Integrative related feeding probs

    Functional Feeding Issues in Autism Pages 1 2

    g/f c/f diet Pages 1 2 

    The Gluten/Wheat Free Guide to Eating Out - A new book on the market called "The Gluten/Wheat Free Guide to Eating Out" with over 50 national/regional restaurants' gluten and wheat free menu items.

    SENSORY ISSUES

    Sensory Integration - Must Read

    How to know if its sensory / What to do

    Sensory Defensiveness & Sensory Diet

    Sensory Integration & Teaching Strategies

    WEIGHTED PRODUCTS  

    Vests

    http://www.specialkidszone.com/Product_Level1.asp?CategoryID =38

    http://www.beyondplay.com/CATALOG/SEN3.HTM

    http://www.calmcomforts.com/vest/vests.htm

    http://www.comeplaytoys.com/kids/CPM-070.HTM

    http://members.aol.com/encourmin/autism2.htm

    http://www.otvest.com/

    http://www.theraproducts.com/index

    http://www.pfot.com/ShowProducts.php?interest=Sensory

    http://www.saltoftheearthweightedgear.com/vestpage.html

    http://www.myweightedblankets.com/vests

    http://search.ebay.com/weighted-vest_W0QQfkrZ1QQfromZR8

    http://www.saltoftheearthweightedgear.com/index.html

    Blankets and Other

    http://www.specialkidszone.com/Product_Level3.asp?ProductID= 1368

    http://www.beyondplay.com/CATALOG/SEN3.HTM

    http://www.calmcomforts.com/blanket/blankets.htm

    http://www.theraproducts.com/index/page-catalog/main-8161/su b-8289/

    http://www.saltoftheearthweightedgear.com/fabricspage.html

    http://www.weightedblanket.net/

    http://www.myweightedblankets.com/pricing___orders

    http://www.ikea.com/webapp/wcs/stores/servlet/ProductDisplay ?catalogId=10101&storeId=12&productId=16269&la ng Id=-1&parentCats=10107*10210     (Hanging Seat)

    CATALOGS for Special Needs (and sites to order from)

    http://www.otawatertown.com/resources.html

    http://www.pfot.com/ShowProducts.php?interest=Sensory

    http://www.specialkidszone.com/

    http://www.beyondplay.com/index.htm

    http://www.theraproducts.com/index

    http://www.specialneedstoys.com/

    http://www.stars4kidz.com/

    http://www.superduperinc.com/catalog.htm

    http://www.difflearn.com/

    RESOURCES

    Misc resources listed by state --  http://www.autism-pdd.net/resources-by-state.html

    State Specific Yellow Pages

    Autism Resources In Canada

    Respite Service Locator

    Protection and Advocacy

    National Resources for Special Needs

    Spec Needs Advocate / Attorney Directory

    Special Ed: Putting the Pieces Together

    SSI (Social Security)

    SSI re evaluation  (Thanks Tabitha)

    School Vaccines NOT Mandatory

    Banning Mercury In Vaccines

    SLEEP PROBLEMS

    1 suggestion... since these kids like predictibility and routine and resist change... DONT START SOMETHING YOU DONT WANT TO HAVE CONTINUE.

    SO here are some suggestions to try

    Some say its a chemical imbalance with the seritonin levels in their body... many swear by giving their child supplements like Melatonin   PLEASE CHECK with your childs dr to find a safe amount if you choose this route

    Melatonin for Sleep Disturbances in Children

    For me part of the help was a small dosage of Clonidine.... even now at 9 1/2 without medication he can not fall asleep until well after 1 am!

    ** ALSO NOTE keeping a journal of when your child sleeps and is awake daily behaviors and so forth is a good idea.. sometimes it gives you better knowledge os what is going on when you can look back over the past several days or weeks and start seen a predictable pattern with your child.

    Reward chart

    Calming Activities like heavy loading or deep pressure massage

    Many believe this is sensory related.. I will include some links here

    How to know if its sensory / What to do  *NOTE this also includes calming activities*

    Sensory Integration - Must Read

    Sensory Defensiveness & Sensory Diet

    Sensory Integration & Teaching Strategies

    Bed tents - they block out the outside stimuli providing a calming and quiet environment for the child to relax and go to sleep Many special needs catalogs sell them here are some links to various places

    http://www.target.com/gp/browse.html/601-3573889-0737750?%5F encoding=UTF8&node=13419891

    http://froogle.google.com/froogle?q=twin+size+bed+tents& hl=en&lr=&sa=N&tab=ff&oi=froogler

    *** Just type in a search for TWIN SIZE BED TENTS and something should come up***

    WEIGHTED BLANKETS! This has been the final thing to really help my son and many other kids here! It isnt 100% but for my son its been 98% I never would have believed if someone had said he would sleep through the night from day 1 but he did!

    http://www.specialkidszone.com/Product_Level3.asp?ProductID= 1368

    http://www.beyondplay.com/CATALOG/SEN3.HTM

    http://www.calmcomforts.com/blanket/blankets.htm

    http://www.theraproducts.com/index/page-catalog/main-8161/su b-8289/

    http://www.saltoftheearthweightedgear.com/fabricspage.html

    http://www.weightedblanket.net/

    http://www.myweightedblankets.com/pricing___orders

    Here is some general info about Sleep problems in ASD kids....

    http://www.angelfire.com/tn3/task/sleep.html

    http://aut.sagepub.com/cgi/content/abstract/5/2/209

    http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=367&a=3376  *good Info here

     

    Organizations

    First I would say it may help to contact www.unlockingautism.org They have a Parent 2 Parent Network  listed that will help connect you to a parent in your state to help you find resources. I know the VP of the organization lives in Georgia (Atlanta area I believe) They also have a national call center 866-366-3361... both are on the front page  there are also links for so many things... heres the links pages as I know for some it is confusing how to get there... http://www.unlockingautism.org/news.asp?action=2 they have info on

    FIND YOUR LOCAL Autism Society of America Chapter here http://209.200.89.252/search_site/index.cfm

    Other organizations are listed here.... In your Opinion  (Thanks Rose)

    LEGAL RESOURCES

    CHANGES IN SSI   http://www.clsphila.org/abc_for_advocates_files/training_mat erial.htm

    Supplemental Security Income / Social Security Administration  http://autism.about.com/od/ssissa/

    DISABILITY BENEFITS  http://www.bizdir.org/index.phtml?browse=/Home/Personal_Fina nce/Retirement/Social_Security/Disability_Benefits/

    LISTING OF MEDICAID, MR/DD, DEEMING WAIVER, TEFRA & OTHER ASSISTANCE PROGRAMS  http://www.geocities.com/HotSprings/Villa/1029/medicaid.html

    Disability, Advocacy, Knowing Our Rights  http://headaches.about.com/od/disability/

    BOOKS

    Autism Resources

    http://www.nap.edu/books/0309072697/html/

    http://www.amazon.com/gp/reader/0399523863/ref=sib_dp_pt/104 -2414085-4493562#reader-link

    http://www.amazon.com/exec/obidos/ASIN/1891383132/ref%3Dpd%5 Fsxp%5Felt%5Fl1/104-2414085-4493562

    http://www.amazon.com/exec/obidos/tg/detail/-/185302967X/ref =pd_sim_b_6/104-2414085-4493562?%5Fencoding=UTF8&v=glanc e

    http://www.amazon.com/gp/reader/0312326440/ref=sib_dp_pt/104 -2414085-4493562

    http://www.amazon.com/gp/reader/0309072697/ref=sib_dp_pt/104 -2414085-4493562

    http://www.amazon.com/exec/obidos/search-handle-form/104-241 4085-4493562



    • Edited by MsSteelersFan on 04 June 2005 at 12:18pm

    __________________
    ~ Michelle
    For PDD,PDD-NOS,Autism -Tests info & Links go here....
    http://www.autism-pdd.net/forum/forum_posts.asp?TID=690& PN=3

    Thanks for all that info.  We newbies need all the help we can get!

    I have one remaining question.  What do all those abbreviations stand for?  NT, ds, dx, etc.  Some are obvious by context, others not so much.  Can anyone help with that?

    Thanks

     

    This is awesome! Thank you so much I am still so new to this this is great!!!!Thank you so much for the info.

    Island Dolphin Care - swimming with dolphins program for special needs children

    http://www.islanddolphincare.org/nonflash/5-day.htm

    It's located in Key Largo, FL

    ~Brooke~

    Dylan's ECSE class had pet therapy the other day and he just loved it.I have some darling pics of Dylan brushing the dog and hugging him.  Pet Therapy is Great.

    CUTTING THROUGH  THE PSYCHOBABBLE:

    DIAGNOSING AUTISM AND PDD-NOS PER THE DSM-IV IN LAYMAN’S TERMS

     This document was born out of confusion experienced by so many parents about the diagnosis of autism or PDD-NOS.  When comparing notes, we discovered that even our physicians did not agree.  One woman told us her psychologist said that a diagnosis of PDD-NOS was reserved for children on the spectrum who are curable; others have been told that PDD-NOS is not even on the spectrum!  We found that many clinicians seem to take a milder diagnosis and simply label it PDD-NOS.

    This document takes the DSM-IV criteria for autism and PDD-NOS and translates it into English.  It also attempts to clarify how a diagnosis of PDD-NOS is made.  Please note that not all symptoms may not be present every day.  Look at typically developing children of same age (peers) and use them as markers.  This document is certainly not a diagnostic tool; it was created by and for parents.

    To make this easy, (1), (2), (3) are categories, the letters (a), (b); etc that appear under each category will be referred to as symptoms.

    DSM-IV Criteria for Autism

    299.00 Autism

    A.      To be diagnosed with autism, you must have:

    o        At least SIX (6) of the below symptoms from categories (1), (2) and (3). 

    o        You must have TWO (2) symptoms from (1- Social)

    o        And ONE (1) each from (2- Communication) and (3 Behaviors and Interests)

    o        The other one (or more) can be from any of the categories.

    (1) SOCIAL

    Social interaction is impaired, must have TWO from below list of symptoms:

    (a)  Problems with nonverbal behaviors such as eye contact, facial expression, body postures and gestures used in social situations

    Examples:

    o        Eye contact – different from peers, may only meet eye-gaze of certain people or have total lack of eye contact – or anything in between

    o        Facial expression – may seem inappropriate to what the situation warrants, may have blank gaze, may not greet you with a smile, may have same expression on face most of time – or any combination thereof

    o        Body Postures – may hold arms close to sides, may try to avoid certain types of social contact, may appear unapproachable due to posture

    o        Gestures – may not respond to a hand held out to shake hands, arms out for hugs etc.  May not understand social ‘cues’ we take for granted

    (b)  Does not make friends like other children in same age group.

    Examples:

    o        While peers are learning to play together, the child is off by themselves

    o        Children learn to play by imitation, this child is not imitating the other kids

    o        Seems to have no interesting in socializing with peers

    o        May approach peers, but not to play…watch and see if the child is approaching in the same way peers approach each other

     (c)   Does not share objects with others for enjoyment.

    Examples:

    o        Does not bring you something that interests them to share with you

    o        Does not point in the distance (i.e. to an airplane) to share with you something that interests them

    o        Look at peers and how they show things they are proud of (ie. Artwork) and see if child does the same thing

    (d)    Lack of social (Consisting in dealings or communications with others) and emotional (characterized by emotion) ‘give and take’; Does not respond to social or emotional cues

    Examples:

    o      Does not seem to seek out or enjoy the company of others; may be aloof

    o      Does not smile back when you smile at him/her (without prompting)

    o      Does not reply “hello” to your greeting (without prompting)

    o      Does not seem especially happy to see you when you return home after work

    o      Does not seem to pick up on the ‘vibes’ of others

    o      Does not become grateful or excited in anticipation of outing or gift (in the same way a peer would)

    o      Does not attempt to comfort someone who is crying

    (2) COMMUNICATION

    Communication difficulties (Must have at least ONE of the below symptoms):

    (a)  Delay in, or total lack of, speech, but does not use gestures to communicate (Delay = not at same level as peers)

    Example:

    o        Does not point to what s/he wants

    o        Does not ‘mime’ his/her needs (ie. Mime ‘eating’ if hungry)

    o        Does not shake or nod head for ‘no’ or ‘yes’

    o        Does not shrug shoulders to show s/he ‘doesn’t know’

    (b) If child can speak, cannot start or hold up their end of a conversation (appropriately)

    (c) May echo phrases, words, songs, parts of movies etc.

    (d) Does not engage in imaginative play (as peers)

    Examples:

    o        Will not pretend to drink from toy teacup

    o        Will not pretend to brush doll’s hair

    o        Will not use items for make belief (i.e. a stick for a cane or a magic wand)

    o        Will not make dolls ‘talk’ to each other

    o        Will not take a toy airplane and ‘fly’ it around the room while saying ‘zoom’

    (3) BEHAVIORS AND INTERESTS

    Repetitive behaviors, interests, and activities – child may get angry if this ‘pattern’ is interrupted.  Must have at least ONE of the below symptoms:

    (a) Child is so focused on an interest that to remove the interest will result in a meltdown

    (b) Routines or rituals must be followed, they appear to have no function

    Examples:

    o      Lining up cars is not necessarily playing ‘garage’; if you attempt to join in, the child will tantrum, walk away, push you aside, etc.

    o      Family members must always sit in same seats; failure may result in tantrum

    o      Must take same route home; one deviation may cause meltdown

    o      Must wear red shirt on Tuesday or risk a tantrum etc

    o      If you go to the video store, you must rent “The Brave Little Toaster” every time or risk a tantrum

    (c) Repetitive behavior such as hand flapping, rocking, ear flicking, chewing on clothing, vocal ‘stims’, spinning etc. Establish if this is self-stimulatory by doing a functional assessment like the Durand Motivational Assessment Scale: http://www.monacoassociates.com/mas/MAS.html

    (d) Preoccupied with parts of objects

    Examples:

    o      Spins wheels of toy cars

    o      Focus on one part of a toy (i.e. doll’s eyes)

    o      Cover parts of book so that s/he can look at one piece

    B. Child is either delayed (not same ‘age’ as peers) or acts differently from peers in ONE of the following (must be noticeable before age three): (1) social interaction, (2) language as used in social communication, or (3) pretend play.

    C. Child does NOT have Rett’s or Childhood Disintegrative Disorder

    299.80 Pervasive Developmental Disorder, Not Otherwise Specified

    PDD-NOS is a diagnosis by exclusion.  If a child presents with some symptoms from (1), (2), and/or (3), and their pattern of symptoms is not better described by one of the other PDD diagnoses (i.e., Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, or Childhood Disintegrative disorder) then a professional might decide that a diagnoses of PDD-NOS is warranted.

    When comparing PDD-NOS to Autism, PDD-NOS is used when a child has symptoms of autism as above, but not in the configuration needed for an autism diagnosis.  Social component is where the most impairment is seen.  Children who fail to meet criteria for autism and don’t have adequate social impairment typically have a developmental disability, and their symptoms can by accounted for by that.

     Looking at above description:
    “299.00 Autism - To be diagnosed with autism, you must have at least 6 of the below symptoms from (1), (2) and (3).  You must have two symptoms from (1) and one each from (2) and (3) – the other two can be any of the other symptoms.”

    PDD-NOS is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3).  A child with PDD-NOS may have the same (or more, or less) number of symptoms as a child with autism, but instead of having 2 from #1 and one each from #2, the child might have 1 symptom from #1 and one from #2, plus two from #3.

    A diagnosis of PDD-NOS is not necessarily a less-severe one than a diagnosis of autism, but can be sometimes.

    Severity of any spectrum disorder can be determined by the amount and severity of symptoms listed above. 

    It is imperative to obtain a thorough psychological assessment performed.  If you do not understand during any part of the assessment, ask questions.  You should feel comfortable to go home and ‘digest’ the information given to you, form any questions or concerns and contact the diagnosing clinician to get your answers.

    Many thanks go out to R.C. for her help with this project!

     

    A notice to our readers...

    This document was put together with input from parents, not physicians.  It is not to be used as a diagnostic tool, nor is it to be considered professional advice.

    This document references web sites that may be of interest to the reader.  BBB Autism Support Network makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites, and specifically disclaims any liability for any information contained on, or omissions from, them.  Reference to these web sites herein shall not be construed to be an endorsement of them or of the information contained thereon, by BBB Autism Support Network.

     

    (c) BBB Autism – July 2002

    This document is the intellectual property of BBB Autism Support Network.

    Permission to reproduce and hand out is granted, provided the document is displayed in its entirety.  Other permissions may be requested by email: liz@deaknet.com.  The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs

    I was looking at the www.coping.org and found it has lots of interesting things on it.  Thanks for posting the site.  Found other issues as well that we are dealing within our household [QUOTE=Jen143]

    There is an awesome resource w/ loads of free videos about autism called 

    www.childnett.tv

    and there is a video from Dan Marino on there talking about how one important thing was that they never treated their son any different than any of their other kids. 

    [/QUOTE]

    http://autismeducation.net/earlyindicators.htm

    Early Indicators of Autism

     

    Over the last 10 years, researchers have identified several red flags to consider in the early diagnosis of autism. Some research is based on retrospective video analysis of social, communication, and play behaviors in the first two years of life for those children later receiving a diagnosis of autism. Other research uses screening methods of children at risk with follow-up over time to determine if the diagnosis is maintained and what might be predictive at 18, 24, and 36 months of age.

    We have learned that there are key factors alerting families and providers to the possibility of autism. These include:

    • absence of or delay in pointing to express interest
    • hand leading or using another's body to communicate, often replacing pointing
    • failure to show interest in or joint attention to games for pleasure