You know, I like to be positive. But today on this International Autism Day (AKA Light It Up Blue #LIUB), I’m not getting the feeling that we have the “awareness” we need. And it makes me ANGRY.
Yes, I’m happy that thanks to Autism Speaks we have 45+ states with insurance mandates!
But I’m boiling red mad because “awareness” is not enough! 😡
- Children identified EARLY. Pediatricians should lose their license when they send a family away and tell them to wait. REFER! A licensed clinician, with expertise in early identification, can determine if it’s autism.
- When the child is diagnosed, early intervention happens IMMEDIATELY without waiting lists or delays.
- Every child should be able to receive applied behavior analysis (ABA) therapy at the intensity recommended by the professional and based on assessment. This should be without regard to race, native language, socio-economic status, or type of insurance coverage. If you want to know more about ABA, read here.
- Every child with symptoms should be screened for appropriate medical treatment of any GI problems such as reflux, constipation, diarrhea, or food allergies/insensitivities.
- Every child should have access to quality behavioral feeding intervention if assessment indicates it is warranted.
Until these things happen, I will stay mad or “I mad” as one of my clients told me recently (when he found out he couldn’t have chocolate ice cream.) Go ahead, light it up blue but let’s turn awareness to ACTION!
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Here at Applied Behavioral Strategies, our mission is to improve the quality of life through effective intervention. One way we hope to do that is by reviewing research articles for our readers. Today’s article is titled “How and Why Parents Choose Early Intensive Behavioral Intervention” and it appears in the latest issue of Education and Training in Autism and Developmental Disabilities (Volume 47, Number 1) a peer reviewed research journal. Several researchers authored the study, including Richard Hastings, one of our favorite research scientists. The full citation for the authors is Tzanakaki, P., Grindle, C., Hastings, R. P., Hughes, J. C., Kovshoff, H., and Remington, B. (2012).
The authors stated that the study had several purposes.
- What intervention options were available to parents when their child was diagnosed with autism?
- What other interventions did parents try before trying early intensive behavioral intervention (EIBI)? (NOTE: ABA is the intervention that is used during EIBI)
- How did parents first hear about EIBI and what were their initial impressions?
- What were the main reasons parents chose EIBI for their child’s intervention?
- What did parents understand about EIBI?
- How did parents access and fund EIBI?
Twenty-three mothers participated in the study. It is important to note that they had all participated in a previous study about EIBI. Sixteen of the mothers received free EIBI for their children through a university program while 14 received services from private providers. The mothers did not receive any compensation for participating in the study. At the time of the study, their children ranged in age from 49 months to 82 months and they all lived at home. Twenty-six of the mothers had additional children in the home. For five families, the fathers lived in a different home. At the time of the study, children had been receiving EIBI on average for 25 months.
Each mother came in for a private interview with a researcher. Prior to coming in for the interview, the mothers were informed about the study purpose and they consented to participate. The researcher asked a series of planned, open-ended questions and recorded the entire interview. Later researchers transcribed the interviews and coded transcripts for themes and categories. A second person separately coded 25% of the transcripts to check for agreement (88% overall across all categories) and to demonstrate study integrity.
- 15 mothers (50% of the sample) reported that they were given no information or advice at the time of diagnosis.
- 4 mothers were told that “nothing can be done” for their child.
- For the mothers who were given treatment recommendations, only 16% were informed about ABA.
- 8 mothers were already aware of ABA at the time of diagnosis and were seeking enrollment in a program.
Results-Interventions Before EIBI
- 21 mothers (70% of the sample) tried at least one other intervention before starting EIBI (speech and language therapy was the most common).
- 23 mothers (76% of the sample) implemented a dietary intervention for their child and 10 mothers (30% of the sample) reported trying nutritional supplements. Half of each group reported positive outcomes.
Results- How Did Mothers Learn About EIBI?
- 11 mothers learned about EIBI from another parent of a child with autism.
- 5 mothers reported learning about it from books.
- 5 mothers reported learning about it from the internet.
Results-First Impression of EIBI
- 20 mothers reported that their first impression of EIBI was a positive one.
- 5 mothers reported an initial negative reaction to it.
Results-How to Learn More about EIBI
- Once the mothers learned about EIBI, to learn more about it, 21 mothers turned to the internet.
- Many of the mothers also read a popular book called “Let Me Hear Your Voice” by Catherine Maurice.
Results-Why Choose EIBI
- Most of the mothers reported that the empirical data and anecdotal evidence served as the main reason for choosing EIBI.
- EIBI is a logical intervention.
- EIBI is available so let’s try it.
Results-Anticipated Benefits of EIBI
- Language improvement (56% of mothers)
- Child learning new skills (43% of mothers)
- Child being cured (40% of mothers)
- Child attending mainstream school (36% of mothers)
Results-Anticipated Pitfalls of EIBI
- Intrusion on family life (56% of mothers)
- Siblings receiving less attention (23% of mothers)
- High cost (23% of mothers)
- Difficult to organize (16% of mothers)
We found this study to be informative but clearly, more work is needed. How do parents want to be involved? Do parents want to participate in therapy or do they want to just be the caregiver? Readers who are parents and who are doing or who have done EIBI/ABA, what are your thoughts on this?
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