Autism Spectrum Disorders

Which includes Autism, Pervasive Developmental Disorders (PDD and PDD-NOS)

and Asperger’s Syndrome

 Historically there have been few resources in this area for parents of children with Autism Spectrum Disorders.  Fortunately, because of the increased awareness of these disorders, resources in Eastern Connecticut are slowly beginning to increase. 

 We have begun to put together a list of area resources, as well as internet sites that have some helpful info, tips, advice.  Keep in mind that resources and websites come and go, so check back here frequently for updates.  And if you find a good resource that is not listed here, please share by contacting Kim. 

 One of the problems that seems to be universal, is the lack of a Positive Behavior Plan incorporated into a child’s IEP.  Many schools continue to deal with the behaviors associated with Autism Spectrum Disorder in a punitive way, rather than as a symptom of the disability.  In several cases in our area, the police and courts have been involved in situations involving children as young as 8 years old.  If you are a parent dealing with this, you know how bizarre and frustrating the lack of understanding is by the “professionals” working with your children.

 Some parents have been able to work with their schools to help write Positive Behavior Plans, and these plans are having a measure of success, as long as they are followed. 

 Below is an example of a very simplistic Positive Behavior Plan, drawn up by a parent to address certain issues their child was having behaviorally in school.  A similar plan was worked out by another parent.  Both were successful.  Once the schools implemented the plans, inappropriate behaviors decreased. 

Goal:

(Name) will demonstrate behavior in regular education class.

Objective 1:

(Name) will participate appropriately during regular classes.

Procedure:

(Name) will be given an index each day with the day's classes listed on it.

(Name) will give the index card to the teacher at the beginning of each class. If behaviors are appropriate, the teacher will put a mark on their respective class and return the card to (Name) at the end of class.

(Name) can trade x# of marks for a reward.

Objective 2:

(Name) will successfully participate in _____ class (specials such as music, art, or PE), follow directions, without _______ (behavior such as tantrums).

Procedure:

(Name) will receive points (reinforce) after each class that directions were followed and ______ did not occur.

(Name) will keep a chart with the help of the team leader to track progress toward a reward.

_______# of points will allow (Name) to (do activity).

 For some schools, and in many cases, this would be too simplistic.  Below are links to several other more involved plans, as well as other helpful links.

 Early Elementary School: http://www.advocatesforspecialkids.org/pb_plan_aut_1p.htm

  Middle school: http://www.advocatesforspecialkids.org/pb_plan_mid_asp.htm

 From http://www.fape.org/pubs/idea_training_materials.htm, “Positive Behavioral Interventions:  Parents Need to Know”    pbi.zip - (free download)

Southeast CT Family Support Network meets the first Wednesday of the month at 6pm at L&M Hospital, unless there is a special event that month.

  Advocacy:

CPAC Connecticut Parent Advocacy Center.  If you need help advocating for your child, you can call in Niantic, at 860-739-3089.  Their services are FREE for parents.

           Organizations, Associations, etc:

 CT Family Support Network is a partnership of parents and professionals across CT. dedicated to supporting families who are raising children with a disability.  They provide support groups, workshops, etc. 

The Autism Society of Connecticut is focused on three areas: serving as a statewide autism resource, providing grants to families who may need financial assistance, and raising awareness of autism.

 The mission of the CT Autism Spectrum Resource Center is to provide, through our many programs, the most recent information and research to help parents and professionals understand the barriers and challenges people with ASD face on a daily basis.  Although the center itself is located in Wallingford, the info and links very helpful.

  From the internet:

Autism Speaks, Inc.  Was your child recently diagnosed, within the past six months, with Autism?  If so, there is a special resource available to you:

 First 100 Days Kit

A tool kit to assist families in getting the critical information they need in the first 100 days after an autism diagnosis.

Click here: http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf,

 or

 you can Request a personalized kit (click here) from Wrightslaw.com, and an Autism Speaks Autism Response Team coordinator will contact you by phone, to get some additional information so that a kit can be personalized for you and your child.

 http://www.bridges4kids.org/

http://www.bridges4kids.org/states/ct.htm for info and resources specific to Connecticut

Autism Information Center from the CDC (Center for Disease Control and Prevention.)  Here they have  an overview of Autism and other Pervasive Developmental Disorders (PDD) as well as sections on symptoms, screening and diagnosis, treatment and therapy and other information.

 http://www.wrightslaw.com/info/autism.index.htm  This goes into a great deal of detail on Autism, Autism Spectrum Disorder (ASD), Pervasive Developmental Disorder (PDD), Asperger Syndrome (AS).  There are definitions of and articles on the various disorders, resources, case law, and frequently asked questions. 

For Professionals (and possibly parents), guidelines and recommendations:  http://www.athealth.com/consumer/Disorders/Autism.html  “Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment”