Early identification of Autism Spectrum Disorders: Why it’s important and why we need to have this conversation with parents

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By Dr Josephine Barbaro, Postdoctoral Research Fellow at OTARC and ASD Specialist in Australia’s first Early Assessment Clinic for Autism Spectrum Disorders.

Since beginning research on the early identification of Autism Spectrum Disorders back in 2005 as part of my PhD program, the Social Attention and Communication Study (SACS),  I was often asked “What’s the point of identifying children at 2 years of age or younger if there are very few or no services for them?” You see, back in 2005, there wasn’t the Helping Children with Autism Package for families of children on the spectrum (aged 0 – 7), or intervention programs like the Early Start Denver Model – the first intervention model with strong empirical evidence for its effectiveness in infants, toddlers, and preschoolers with ASDs. So, at this time, many families had to wait on long waiting lists for early intervention services, as long as 18 months in some cases, to receive a few hours a week of services!  It was therefore difficult to convince some people, both in the public and private sectors, of the importance of early detection and subsequent intervention.

Our argument at the time was that being placed on a waiting list earlier than would usually be the case meant that these children would still receive services earlier than if they were detected and diagnosed later. However, and most importantly, an issue that was, and still is, often overlooked is the impact that early detection, diagnosis, and the knowledge that is gained from this, can have on parents – the knowledge that the difficulties and differences they see in their child are a result of a biological, neurodevelopmental disorder, and NOT because of “bad parenting”, “being overly anxious”, or immunising their child; and that the comments and criticisms that many parents often receive that “she’ll grow out of it”, “you’re worrying for nothing”, “just wait and see and he’ll be fine” are just not true. There IS something different about their child, and there IS something that they can do to help him or her reach his or her potential. These parents need someone that can have this conversation with them, and the expertise to direct them to the right services.

So where should this conversation begin? In Victoria, when parents attend their Maternal and Child Health (MCH) centre for routine check-ups of their child, the MCH nurse monitors the child’s overall health and well being, and the progress of developmental milestones, including social attention and communicate difficulties – the “red flags” of ASD. These include flags such as: reduced eye contact or social smiles, not responding to their name, not pointing or showing objects to their caregivers to direct their attention to things they find interesting, not playing with their toys as they are intended, or engaging in pretend play. If a parent raises concerns, and/or their MCH nurse notices some absent social attention and communication skills, the conversation about possible reasons for this should start here. And this is where we feel the best research on the early identification of ASDs can, and has been, conducted. As part of the SACS, we have previously monitored over 20,000 babies in an MCH developmental surveillance program for the early signs of ASD from 2006-2008; 81% of all children identified by their MCH nurse as “at risk” for ASD were diagnosed with ASD by age 2, which was achieved with high sensitivity – that is, most children with ASD were picked-up through our MCH surveillance program. We are currently attempting to further improve the accuracy and sensitivity of our developmental surveillance program for ASDs through MCH centres in 8 Local Government Areas: Bayside, Banyule, Boroondara, Hume, Kingston, Knox, Moonee Valley, and Nillumbik. This new program of research, the Social Attention and Communication Study-Revised (SACS-R), is part of the new Autism Cooperative Research Centre and involves the training of our already very skilled MCH nurses on the early signs of ASD.  This program will now be replicated in New South Wales, Queensland and Western Australia, where the trained primary healthcare professionals will refer children for a comprehensive developmental assessment if they, or the parents, identify concerns about a child’s social attention and communication development.

The SACS-R program will be implemented for the next 3 years, and, in the process, will facilitate conversations between parents and their primary health care professional – what is different about my child’s development, and what can I do about it? For parents, just having a place to go where professionals are willing to listen and not dismiss their inherent concerns about their child’s development has an enormous impact on their mental health and well being, and positive impacts on their child’s development and future outcomes. We are currently charting these outcomes at OTARC.

4 Responses to "Early identification of Autism Spectrum Disorders: Why it’s important and why we need to have this conversation with parents"

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  1. Hannah Louis

    October 3, 2013 at 1:08 pm

    I don’t think this is accurate …..”You see, back in 2005, there wasn’t the Helping Children with Autism Package for families of children on the spectrum (aged 0 – 7), or intervention programs like the Early Start Denver Model – the first intervention model with strong empirical evidence for its effectiveness in infants, toddlers, and preschoolers with ASDs.”

    The Early Start Denver Model is definitely not the first intervention model with strong empirical evidence for its effectiveness. Dr Lovaas published his groundbreaking group research on ABA and autism in the 1980’s. Princeton Child Development Institute was founded in 1970 to provide evidence based treatment for autism and is an long established centre of excellence for ABA. Before that there were many published empirical studies in the journal of applied behaviour analysis supporting the effectiveness of ABA. Australian families were getting their kids diagnosed and running private ABA programs for many years before esdm. “Helping Children with Autism Package” is a welcome break, but the lions share of expense for running an evidence based program is still borne by families. It’s nice that a relatively small number of families might get some help at Latrobe but the unmet need is still great.

    With respect to immunization, it is not a myth that children are harmed by immunization, every medical procedure carries risks. In fact there is a special vaccine injury court in the USA which you can find at the following link. http://www.hrsa.gov/vaccinecompensation/index.html . There is at least one case where a child with asd was compensated through this court for vaccine injury. Vaccines are important, but OTARC should recognize that kids at risk for asd might need a more thoughtful medical alternative to the one size fits all vaccination schedule.

    It is nightmarish to be a parent of a child diagnosed with asd stuck in a highly compromised program and not making progress. Too often, mothers find that they exhaust the available expertise in Australia and programs are only capable of serving “high functioning” children. The more you understand the critical and avoidable errors in your child’s program, the greater the stress. Any time and money wasted in substandard programs, flawed parent directed programs or no programs is not good for mother’s mental health. Neglecting the needs of other children in the family is also not good for parent’s mental health.

    • Lisbeth Wilks

      October 3, 2013 at 4:32 pm

      Thank you for your comments. In regards to the comment about the ESDM, it is the only program to be specifically developed and have scientific support for its efficacy in INFANTS and TODDLERS, and that’s what was referred to in the article – for children 2 years and under. The ESDM has been designed for children with ASD at all levels of functioning and the evidence shows that it is effective across the spectrum. It also recognises that children’s learning ability differs between individuals and that additional resources may need to be employed if a child does not progress. We do not discount that ABA has been available for many years for older children and is still an effective and valid intervention approach with strong empirical evidence for children of preschool age and older.

      In regards to the comments about immunisations, although all medical procedures carry risk, there is no scientific evidence to suggest that Autism is caused by immunisations. The link you provided about the U.S. injury compensation court is interesting, but confirms our position: further into the page there is reference to a few court cases regarding the MMR vaccine and autism http://www.hrsa.gov/vaccinecompensation/omnibusautism.html . There it clearly states that U.S courts ruled in favour of the Compensation Program, meaning that the claimants who filed for compensation were not being compensated because of the lack of evidence that MMR vaccines cause Autism.

      We whole heartedly agree with your last comments that programs should be tailored to the child and that evidence-based programs should be more readily available to benefit children and reduce stress in families. We advocate for services based on age and need, rather than a diagnosis.

      • Hannah Louis

        October 4, 2013 at 12:28 am

        Your comments about esdm being the only evidence based program for infants and toddlers is misleading. Page 45 of the National Autism Standards Report lists behavioural methods besides ESDM that are accepted as “established” evidence based treatments for children aged 0 to 2.

        I think that the National Standards Autism Report is a very reliable source of information and parents should not be discouraged from pursuing it’s full range of recommendations.

        Regarding evidence of no link between asd and immunization, I think the jury is still out on that, there is too much bias and uninformed comment on both sides of the argument.

        But, however you slice it and dice it, one case of a child with autism caused by vaccination is evidence. For that child, the community’s perception of the statistical significance of their harm is irrelevant. It is my experience that Australian doctors specializing in childhood immunization are willing to discuss safer ways of administering immunizations for children at higher risk for asd.