No wonder autism moms feel isolated and alone. Listen to this conversation I recently overheard at the park. You have to learn a different language to speak autism-mom talk. Don't worry there is a glossary at the end.
Mom 1: Does Matt have an ASD diagnosis?
Mom 2: Matt hasn’t been diagnosed with ASD – he’s PDD, ADHD, LD, and has SID.
Mom 1: What kind of interventions have you done?
Mom 2 : Traditional ABA with DTT then switched to PRT.
Mom 1: Are you doing RDI? That’s really good for socialization.
Mom 2: Yes, we’ve also done RDI, but I prefer DIR – it’s more child friendly. The best thing I found for Matt was the SCD diet, we did that after GFCF. Our DAN Dr. introduced us to the SCD. We also did IgG.
Mom 1: Did you do IgG with an IV?
Mom 2: Yes, I read a study by the NIH about IgG for children with ASD. The children were rated by the ABC and then scores compared to their IgG levels.
Mom 1: Hmm, interesting. We have Kevin on an SSRI that helps with his anxiety. He had an EEG and it didn’t show any SZ’s. I was worried about SZ’s. Do you have the SCD as part of Matt’s IEP? I think IDEA allows for dietary inclusions.
Mom 2: No, it is in his IPP. The SC at TCRC suggested we add it to his IPP. We did an ATEC from the ARI website and Matt improved with the SCD. We also added EFA’s to his diet.
Mom 1: Really? Kevin has behavior problems. He’s on the GFCF diet. He has GI problems and IBD. Maybe we should try the SCD. I heard good things about the BED diet. Have you?
Mom 2: Yes, I may try that one at another time.
Mom 1. Couldn’t hurt. We added a BIP as part of his IEP. His OCD was causing problems in the class. We had to do a FBA. The school district hired a BCBA from CARD for consultation.
Mom 2: That must have been expensive. Is Kevin in a SPED SDC class?
Mom 1: He’s in the LRE – a regular ed class with a TSS. He’s getting FAPE.
Mom 2: Does he use any kind of AT?
Mom 1: He uses FC; the TSS has been trained on FC as part of an AT training at the SELPA. We did an ATA to determine that he would benefit from FC.
Mom 2: Our SLP works with PECS.
Mom 1: Does that work? The school district likes the TEACCH method, but I don’t care for it.
Mom 2: It seems to help. Matt responds well to SS’s and we just got him an IPAD. We put that in his IEP.
Mom 1: I hear there are good ASD APPS for IPADs
Mom 2: Yes, I heard that too.
Mom 1: Do you have an OT as part of your MDT?
Mom 2: Yes, and Matt receives SI as well.
Mom 1: I went to a training class on SI that was offered by the SELPA.
Mom 2: Our LEA doesn’t offer that type of training.
Mom 1: I’m worried about the DSM-V and the new classifications.
Mom 2: Me too. I don’t know why they want to change the DSM IV. Do you receive IHSS?
Mom 1: No, our family makes too much money. When Kevin is 18, he will be eligible for SSI. We want him to be in Inlv. I heard the DDS is making the RC’s cut their budget.
Mom 2: I heard that too. I hope ARCA is lobbying against the cuts. What does Kevin do for ESY?
Mom 1: .The school district offers a short program. We have some fun SI activities planned for the summer. How about Matt?
Mom 2: We’re going to work on a PTP for him over the summer. He’ll be 18 in November. I want him to be able to pass the CAHSEE.
Mom 2: Look at that NT over there. (Mom 2 points her finger in the direction of the sandbox. They both look at a little girl playing in the sand.)
Mom 1: Do you think she is really an NT?
(The little girl starts flapping her hands)
Mom 2: She looks a little stimmy.
Mom 1 (sighing) Yea, NDA’s are rare these days.
Mom 2: She’s probably NDY.
ABA – Applied Behavior Analysis
ABC – Autism Behavior Checklist
ADHD – Attention Deficit Hyperactive Disorder
ARCA – Association of Regional Center Agencies
ARI – Autism Research Institute
ASD – Autism Spectrum Disorder
AT – Assistive Technology
ATA – Assistive Technology Assessment
ATEC – Autism Treatment Evaluation Checklist
BCBA – Board Certified Behavior Analyst
BED – Body Ecology Diet
BIP – Behavior Improvement Plan
CAHSEE – California High School Exit Exam
CARD – Center for Autism and Related Disorders
DAN – Defeat Autism Now
DDS – Department of Developmental Services
DIR – Developmental Individual-Difference Relationship-Based Model
DSM – Diagnostic and Statistical Manual
DTT – Discrete Trial Training
EEG – ElectroEncephelogram
EFA – Essential Fatty Acids
ESY – Extended School Year
FAPE – Free and Appropriate Education
FC – Facilitated Communication
GFCF – Gluten Free/Casein Free
GI – Gastro-Intestinal
IBD – Irritable Bowel Disorder
IDEA – Individual with Disabilities Education Act
IEP – Individual Education Program
IgG – Immunoglobulin G
IHSS – In-Home Support Services
Inlv – Independent Living
IPAD – tablet computer designed by Apple
IPP – Individual Program Plan
IV – Intra-venous
LD – Learning Disability
LEA – Local Education Agency
LRE – Least Restrictive Environment
MDT – Multi-Disciplinary Team
NDY – Not Diagnosed Yet
NDA – Not Diagnosed with Anything
NIH – National Institute of Health
NT – Neuro-typical
OCD – Obsessive Compulsive Disorder
OT – Occupational Therapist
PDD – Pervasive Development Disorder
PECS – Picture Exchange Communication System
PRT – Pivotal Response Training
PTP – Personal Transition Program
RC – Regional Center
RDI – Relationship Development Intervention
SC – Service Coordinator
SCD – Specific Carboyhdrate Diet
SDC – Special Day Class
SI – Sensory Integration
SID – Sensory Integration Dysfunction
SLP – Speech and Language Pathologist
SPED – Special Education
SELPA – Special Education Local Plan Area
SS – Social Stories
SSI – Social Security Income
SSRI – Selective Serotonin Reuptake Inhibitor
Stimmy – self-stimulating
SZ – seizures
TEACCH – Treatment and Education of Autism and Related Communication Disorders
TCRC – Tri-Counties Regional Center
TSS – Therapeutic Support Staff