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...or what to do once your child receives a diagnosis:

In the spring of 2008, a few leaders in the Shreveport autism community planned a meeting for the general population to meet and discuss issues in autism specific to this area. Several dozen citizens, professionals, parents of ASD children, and political dignitaries met. One purpose of the meeting was to identify area resources. I remember two specific goals (of many) that were identified at that meeting. One goal was to get information to pediatricians, who are often the first person to see a child with autism, and the other was to design a “Play Book” so to speak on the “what, where, and who specifics” of proceeding once your child receives a diagnosis. It was from that meeting and those two goals that this website was born.

The following month a meeting with area pediatricians was organized and I have made available the contents of that meeting on this website. The “Play Book” has taken longer to come to fruition. I firmly add the caveat and disclaimer that this is not an exhaustive list and apologize in advance for things that are missed. Hopefully, this "playbook" will be a work in progress. Email info@AutismDiagnosticCenter.com with any ideas, questions, concerns etc.

A parent hardly has time to soak in the news that their child has just received a diagnosis that will likely change the family’s world before facing many difficult decisions. Discovering that your child has autism can be truly overwhelming. An autism diagnosis brings a multitude of questions about how to proceed. The following suggestions are just that…suggestions. Hopefully, you will find at least some of them useful.

  • Do SOMETHING! Although the news may be immobilizing at first, please know that Early Intervention is key.

  • But first — as silly as this sounds — look yourself in the mirror and tell yourself that you did NOT cause your child to have autism. Even very well-educated parents carry this nagging doubt in their head, and there is no truth in it at all. Feel better?

  • Set up a binder from the very start of the journey. You will thank yourself later. Keep all information organized and handy starting with the diagnosis, assessments/evaluations, copies of correspondence, call log of all conversations, meeting notes, IEPs, etc.

  • Educate yourself! You will find that knowledge is powerful and conversely, ignorance is not “bliss.”

  • If you are like most parents, you rely on the “professionals” for advice on your child’s medical, educational, and psychological planning. WRONG! You will learn that you will need to advocate for educational services, educate your child’s providers and care-takers, and grow a very thick skin to the ignorant and oftentimes hurtful comments of others.

  • The first place I would recommend starting is with the professional who provided the diagnosis. The diagnosis was hopefully made with actuarial data, clinical observations, and collateral respondents and information across settings. In other words, it will not be given with a “snapshot.” I see parents who are oftentimes frustrated with pediatricians and I try to explain that in the physician’s defense, autism cannot typically be “seen” in an office visit.

  • Ask the professional who provided the diagnosis what are your child’s specific needs, strengths, priorities, etc. The obtained data should contain specific recommendations based on your child’s individual results. Remember that most diagnoses are rendered as a results of multi-disciplinary measures and there should be specific (at least preliminary) data regarding language, sensory, social, communication, and learning needs.

  • Generally, there are four areas of treatment programming: communication, social, academic, and independence training. The report you receive should contain information about all four of these areas.

  • Of course, other issues specific to autism can impact one or all of these areas, such as sensory processing dysfunction, behavioral issues, comorbid mood disorders, etc.

  • When this is the case, the problems interfering with learning need immediate intervention. For example, in children with high arousal levels and problems attending to tasks, medication may be needed first. Unless a child can attend, learning of any type will be difficult.

  • While there is no known cure for autism to date, there are treatment and education approaches that may reduce some of the challenges. Interventions are available to help to lessen disruptive behaviors, acquire social skills, and increase self-help skills that allow for greater independence.

  • Education is another area that will need decisions. Again, arm yourself with INFORMATION. Your child will need a special METHOD of teaching. It is not necessarily about the school, or inclusion versus self-contained, but it is about the METHOD used to teach your child.

  • Briefly, teaching methods which are founded in Applied Behavior Analysis are considered best practice according to the current research/literature.

  • These methods include, but are not limited to, Verbal Behavior, TEACCH, PECS, Structured Teaching, Discrete Trial Instruction, Incidental Teaching, and Natural Environmental Instruction.

  • Additionally, most methods have some type of Visual Supports in place. Students with autism often learn best visually and there should be an ongoing assessment of visual support.

  • The method of teaching chosen for your child should promote independence and generalization of skills. One of the first questions to ask is “What type teaching method will be utilized” followed by “Is the teacher trained in that method and to what extent?”

 

I recommend this link to use as a good starting place in researching all the different autism treatments. There are specific pages that can be saved to your computer about each treatment.

It is important that you understand the type of educational programming and treatment offered (or available) to your child. Obtain a copy of the recommendations section of the book Educating Children with
Autism. Published in 2001 by the National Research Council, it summarizes an expert panel’s literature review regarding evidence-based treatments.

Also, the National Institute of Mental Health has compiled the following questions to assist parents with important decisions:  

  1. How successful has the program been for other children?

  2. How many children have gone on to placement in a regular school and how have they performed?

  3. Do staff members have training and experience in working with children and adolescents with autism?

  4. How are activities planned and organized?

  5. Are there predictable daily schedules and routines?

  6. How much individual attention will my child receive?

  7. How is progress measured? Will my child's behavior be closely observed and recorded?

  8. Will my child be given tasks and rewards that are personally motivating?

  9. Is the environment designed to minimize distractions?

  10. Will the program prepare me to continue the therapy at home?

  11. What is the cost, time commitment and location of the program?


Depending on your child’s individual needs, treatment should include interventions addressing the four areas of communication, socialization, educational/academic, and independence.

Behavioral and/or mood components may need pharmacological intervention.

Occupational therapy provides intervention for sensory processing dysfunction.

Speech-language therapy provides services for communication. Depending on your child’s needs, intensive services are generally recommended. This would entail sessions beyond the school setting if at all possible.

Choose an OT and speech-language therapist familiar with developmental disorders. They are not all “created equal” in this manner. Some therapists have different training with a focus on other populations. You want therapists who are specifically trained to work with children with autism. 

Request, in writing, that your child be evaluated for special education services in his/her school district (3 years and older).

Print/read “Best Practices for Designing and Delivering Effective Programs for Individuals with Autistic Spectrum Disorders”.

 

What else...

Apply for services…you will need them!

Insurance…..get “educated” prior to requesting information about autism services. Remember that autism is a medical diagnosis as opposed to mental health, and as such, should be treated as a neurobiological disorder. For instance, if your child has a “Developmental Delay” diagnosis, he or she will typically be authorized for a set amount of speech therapy sessions; whereas, an autism diagnosis typically increases services.

After getting “educated” then get smart! Oftentimes, your provider(s) can do very simple, legal, ethical things that determine insurance outcomes if those things are identified. Sometimes, your child’s primary diagnosis may not be changed in the insurance system and thus, the discontinuance of services. For example, the diagnosis of “Developmental Delay” offers far less speech-language services than the autism diagnosis for some insurance companies. *MAKE SURE THAT YOUR INSURANCE HAS THE RIGHT DIAGNOSTIC CODE.*

Office of Citizens with Developmental Disabilities is a state run agency that offers services, stipends, and support to individuals and families with developmental disabilities. Apply for services immediately.

Families Helping Families: Great organization that offers education, advocacy, and parental support. Very friendly, helpful staff….just call with your questions. They have an educational advocate who can attend IEP’s with you (I think this service is still available).

Autism Society: Another great group of folks! This is a definite “Must-Do” as you will benefit greatly from the support AND knowledge of the members. And for the children, there are parties, picnics, summer camps, etc.

Your child may be eligible for Social Security benefits (SSI). Unfortunately, these benefits have an income eligibility criterion; call the SSA office or apply online.

Contact Families for Early Autism Treatment (FEAT) and request their new parent packet, which includes their parent handbook. Sign-up for their free mail list and newsletter.

Continue to read and learn about your child’s diagnosis and specific areas of need.

 

Parental Information

I have personally learned more from parents about life, love, acceptance, advocacy, tenacity, and yes….even about autism…than from any formal education setting.  I love the way they hold each other up, support one another through trials, and take “new” parents under their wings. I marvel how they laugh at things that would make the rest of us pull out our hair.

And so, the best RESOURCE I can give to parents is to introduce them to other parents who have already traveled, travailed, and paved that road ahead.

Lastly, the following tips are offered for general information, education, advocacy, and “survival."

Education: It is easier to work with the school system than to “fight the system.” Probably the best thing to remember is that special education is a LEGAL process. Just as with any other judicial process, INFORMATION is crucial.

I am by no means a lawyer nor do I know the IDEA law particularly better than anyone else. But I do know that INFORMATION is the best tool you can have. No one is going to gather around a conference table and say to you, “Let us take a look at all the available options for your child, and then we can let you decide the best educational plan for him/her.” Know what you need and what you want and know your legal rights prior to attending any school board meeting.

There are some who will argue vehemently that all children need/deserve inclusion. While theoretically sound, also remember that an Individualized Plan is just that: individualized! As such, you are encouraged to determine what is best for your specific child and his or her individualized needs. There are some children I know who have thrived when given the opportunity and supports for an inclusion classroom. However, there are other children who would be given disservice if forced to stay in a classroom that is over-stimulating to the point that precludes learning.
The tenets of “Differentiated Instruction” and “Functional Behavioral Assessment” are central to the development of appropriate instructional and behavioral interventions for ALL students.

There are “Best Practices” available that have been created by experts in IEP for students with autism. These Best Practice Guidelines are based on underlying philosophies that utilize individualized techniques and strategies delivered through collaborative effort. These guidelines are the right of each and every student regardless of classification of disability, recommended service or mandated related and/or support services.

 

Best Practices for IEP/Autism

  • When completing IEPs for students with Autism, all information previously discussed should be addressed.

  • Special attention should be given to the correlation between the communicative and behavioral aspects of autism.

  • All components of Differentiated Instruction and Functional Behavioral Assessments should be addressed in the IEP.

  • In addition, the following should be noted:

  • While the IEP addresses a broad range of developmental and educational needs, it specifically includes in-depth discussion in the areas of communication, social interaction, behavior and emotional development and play and use of leisure time.

  • Address specific teaching strategies using generic descriptors (e.g. discreet trial instruction rather than ABA)

  • Every student should have a consistent communication system in place, including any augmentative and alternative modes employed.

  • Program should be devised to allow student to become as functionally independent as possible

  • The IEP identifies program modifications, including environmental and instructional adaptations and accommodations that are needed to support the student

  • Instructional and environmental management needs include the use of one-to-one instruction, small group instruction, child-initiated interactions, teacher-directed interactions, play and peer-mediated instruction

  • Instructional methods noted emphasize the use of naturally occurring reinforcers, promote high rates of successful performance, encourage communication and social interaction and encourages the spontaneous use of learned skills in different settings.

  • In general, you can consider your child has the best education in whatever setting he or she is in if the educational plan offers individualized supports and services for students and families, a specialized curriculum, systematic instruction, functional approach to behavior, and a structured environment conducive to learning. All of these elements are based on YOUR child’s needs.

  • Ask the IEP team what METHOD of teaching is used for your child. Instruction should have 3 key elements, to include a functional communication system, sensory needs, and interests (motivation). Again, these elements should be highly individualized for your child.
     
  • Your child’s educational plan should be designed and planned with the goal of the greatest degree of independence and generalization of skills possible.

  • The teaching methods which are founded in Applied Behavior Analysis are considered best practice according to the current research/literature. These methods include, but are not limited to, Verbal Behavior, TEACCH, PECS, Structured Teaching, Discrete Trial Instruction, Incidental Teaching, and Natural Environmental Instruction. Additionally, most methods have some type of Visual Supports in place.

  • If your child has a medical diagnosis or Autism (and/or an Educational Classification of Autism) then they need to be taught by one of the above methods.


Lastly, please study, study, study the Autism Qualitative Indicators, which are compilation of the best practices in educating students with autism.  The link is provided followed by one example of what should be in that particular IEP section. This program was started in New York but is actually being piloted in some parishes in Louisiana, to include Desoto Parish in North Louisiana. If thoroughly studied, this may be the ONLY tool necessary to arm yourself with educational knowledge.

There are a total of 14 sections. The following is an example of one section and grading scale:

Score Description
NA Not applicable. The program is not responsible for this area.
0 There is no evidence of this indicator.
1 There is minimal evidence of this indicator, but clear evidence exists that the program is in the process of planning for implementation and/or staff development.
2 There is some evidence of this indicator or there is clear evidence of the indicator for only a portion of students with autism.
3 This quality indicator is clearly evident for all students with autism.

 

Thorough diagnostic, developmental, and educational assessments using a comprehensive, multidisciplinary approach are used to identify students’ strengths and needs. Score Comments
1) Evaluations are conducted by multidisciplinary teams made up of qualified personnel who are familiar with the characteristics and response patterns of students with autism. . .
2) The medical and developmental history review factors specific to autism. . .
3) Evaluations include the examination of the individual skills and strengths of students with autism, as well as their needs. . .
4) Evaluations use a variety of measures and sources of information, including:

a) appropriate standardized, developmental, and observational methods
b) autism-specific measures
c) parent and family input
d) review of recent progress and functional level
. .
5) For both verbal and nonverbal students, speech and language evaluations use standardized measures, parental report, observation, and spontaneous language samples to assess:

a) receptive language
b) expressive language
c) speech production
d) communicative intent
e) pragmatics
. .
6) Evaluation reports integrate results from all areas in ways that lead directly to programmatic recommendations for instruction. . .
7)

Evaluation reports are written in a meaningful, understandable manner.

. .
8) Evaluation reports are shared with the student (if appropriate), parents, educators, and other professionals who work collaboratively with the family. . .
Summary Rating for Individual Evaluation . .


Please know that God makes no mistakes and you have been chosen and entrusted to care of one of ‘earth angels.’ This is no coincidence! Be good to yourself!



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