- You can get an autism evaluation for your child from a developmental pediatrician, an autism center, a neuropsychologist, etc. The easiest way is to request an evaluation from your county’s Early Intervention agency (Regional Center, Intermediate Unit, etc.).
- The autism evaluation should have multiple factors, including assessment (ADOS is one such test), parent and therapist surveys, observations, and other information such as the fact that nearly all children with Dup15q have autism.
- Although signs of autism can emerge as early as 6-12 months, many practitioners will not give a “rule-out autism” diagnosis until 18 months and provide an actual autism diagnosis at age 3
Do I want my child to receive an autism diagnosis?
- Anecdotally, children receive more services and more intensive services from an autism diagnosis rather than a genetic diagnosis.
Do most children with Dup15 syndrome have an autism diagnosis?
- Most individuals with Dup15q syndrome have autistic features. Autism is defined as a developmental disorder of variable severity (a spectrum) that is characterized by three elements: (a) language delay or communication disorder, (b) difficulty in social interaction or atypical social skills and (c) repetitive behaviors or restricted or perseverative interests.
- Dup15q children have a particular ‘flavor’ of autism that has a high social motivation (desire to make relationships) accompanied with challenges in communication, atypical social skills (may be ‘too close’ rather than ‘aloof’), and motor difficulties.
What is ABA?
- ABA stands for Applied Behavioral Analysis. ABA is used to help children with problematic behaviors, and to also work on important skills. Once behavioral targets and measures are set, the behaviors are shaped with immediate, contingent, differential, positive reinforcement. The goal is to increase specific behaviors that are helpful– such as social skills, communication, reading and academics, as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, leisure skills, domestic capabilities, punctuality, and job competence–and decrease behaviors that are harmful or affect learning. (https://www.psychologytoday.com/us/therapy-types/applied-behavior-analysis)
- There are several styles of ABA, ranging from therapist directed (discrete trial, Verbal Behavior) to relationship-based (JASPER, Early Start Denver Model, PRT), to child-directed (Floortime).
- Because children with Dup15q syndrome tend to be socially motivated, the relationship-based flavors of ABA tend to be most effective for this population.
How can I obtain ABA services for my child?
- You will likely need an autism diagnosis for your child to receive ABA therapy.
- Some school districts offer ABA as a therapy on campus, but unfortunately this is not common. States where you are likely to see in-school ABA services are New Jersey and Massachusetts. Since most school districts do not offer ABA as a therapy, children are instead attending out-of-school ABA centers. These centers can be for-profit or non-profit, and vary considerably with regard to the number of clients served.
- There are four basic ways to pay for an ABA program.
- Early Intervention (Regional Center, Intermediate Unit, School District). If ABA is a “related service” to be provided in an IEP, the school district will pay for it.
- Public Insurance. Medicaid (Medical assistance, Medical, etc.) will pay for ABA in some states.
- Private Insurance. Some states require private health insurance by certain types of companies (e.g., over a certain size, incorporated in state, not self-insured) to include ABA coverage. For specific information regarding your respective state’s ABA coverage requirements, see the State-by-State Guide to Insurance Laws Covering the Treatment of ASD with Applied Behavior Analysis, at https://www.appliedbehavioranalysisedu.org/state-by-state-guide-to-autism-insurance-laws/
- Private pay
- There are four basic ways to pay for an ABA program.
- ABA can be an after school program or a day program and it will be an excused absence from school. ABA can also be provided in your home for a child to generalize skills and behaviors learned in a center-based program. An ABA program could be also considered an Extended School Year.
How can I obtain a 1:1 aide for my child in the IEP?
- 1:1 support is necessary if there are safety issues that require close supervision of your child, including eloping, aggression, self-injurious behaviors, or medical issues (such as seizures).
- 1:1 support may be warranted if there are behavioral issues that impede learning for your child or his peers, such as inattention, sensory disregulation, disruption or impulsivity.
How can I obtain a private school placement for my child in the IEP?
- You need to make data-informed arguments based on the concepts of LRE and FAPE, in order to get a private school placement.
- Least Restrictive Environment (LRE) is the principle that a child should be educated in the local public school with as many supports as necessary to allow the child to access her education.
- Free and Appropriate Public Education (FAPE) is the legal promise to every child that they can get an education . IEPs must be “reasonably calculated to enable a child to make progress in light of the child’s circumstances’ (Endrew). A private school placement is often more restrictive, but may be better positioned to provide FAPE to a disabled child.
- In practice, private school placements are more expensive than public school placements, so school districts do not often just agree to do this. You may have to collect a lot of data showing that public school placement is not appropriate, or file due process before a decision is made. The school district may agree to place your child in a private school, in which they will attend IEP meetings and continue to be ultimately responsible for providing FAPE. Alternatively, the school district may negotiate an educational services agreement with you, where you waive their responsibility to provide FAPE in exchange for tuition at the private school. If you are seeking an educational services agreement, you should have it reviewed by an educational lawyer before signing.
- There are also waivers in some states (e.g., Ohio) which you can use toward the tuition of a private school. These are state specific.
- You will never be handed a list of all the private school options in your area that could serve your child. You will have to do your own local research, talking with other special needs parents, advocates, local online support groups, local family publications, etc. One way to find out where your school district sends children is to check out the bus routes.
- Here are some resources about out of school placements:
How much speech therapy/occupational therapy/physical therapy, etc. should my child receive?
- Because of their language delays and motor skill challenges, most children with Dup15q Syndrome require significant speech therapy, physical therapy, and occupational therapy each week.
- Services such as speech therapy, occupational therapy, physical therapy, vision therapy, music therapy, adaptive PE, etc. are determined by your child’s needs and goals. For example, in order to get occupational therapy, the most current evaluation of your child should demonstrate a need for assistance with fine motor skills. Consequently, it is imperative that the evaluations completely describe the child’s needs as well as the goals necessary to meet those needs.
What should I do when my child’s IEP is not being followed?
- First, talk with your child’s teachers to make sure they understand what the IEP requires. Be collaborative rather than confrontational.
- If it still appears not to be followed, then document what is happening. Call an IEP meeting to come up with solutions. Schedule a followup IEP meeting in 4 or 6 weeks to assess compliance.
- If this is ineffective, there are other options. You can submit a written complaint to the Director of Special Education or Superintendent. You can ask to move classrooms or schools within your school district or out of district. You can bring a special education advocate or attorney to your meeting. You can file a complaint with the State. You can use your due process rights and go to mediation or a due process hearing (you need to hire an attorney for a due process hearing).
- Here are some resources about what to do when the IEP is not being followed:
- Wrightslaw From Emotions to Advocacy 2nd edition
What should I do when my child’s behaviors are interfering with learning?
- You can request a Functional Behavior Analysis (FBA) evaluation by a Board Certified Behavior Analyst (BCBA). With ABC analysis, the FBA will note the (A) Antecedent to the (B) Behavior and (C) Consequences to the behavior, and determine patterns and motivations for the behavior (e.g., attention seeking, avoidance, self stimulatory, etc.) With that information, a behavior intervention plan (BIP) will be developed to be followed by school staff.
- Since behaviors may occasionally be triggered by school staff, the observations and ABC analysis should be done by an outsider.
Can I observe in my child’s classroom? How long?
- Yes. You can be an active participant in the IEP and educational process, and you can also determine whether the proposed goals are being worked on and are appropriate. Talk to the school office about scheduling a time. You will likely have to complete a form.
Can cameras be placed in my child’s classroom?
- It is different in every state. Some allow it and some don’t. Contact your school district and search the laws in your state. States that currently allow cameras are: Texas, Georgia, & West Virginia.