As many of you know Emerge clinicians are collaborating on a book about Autism Assessment that we hope to submit to our publisher around the end of the year. As we have reviewed countless research studies to provide the most up to date data we have encountered so many positive outcome studies. With early intervention including ABA services and protective factors like cognitive and adaptive skill strengths children are making huge gains.
On the other hand, it is disheartening to read the research regarding time of first concern and time of diagnosis because we see that valuable time is often lost before children are diagnosed and interventions including ABA are implemented. It is sad to see a broken system in which families express concern early, services are available to have a considerable impact on optimal outcomes but diagnoses are not provided until years later. Published data on age at diagnosis indicates that the mean age at time of diagnosis ranges from 3 years 2 months old to 10 years old. This is a large range and meta-analysis indicates that the age is going down over more recent years. Good news! Daniels and Mandell (2014) considered 42 studies published from 1990 to 2012 to establish the age range 3 to 10. This is consistent with what we see in practice. Sometimes children are diagnosed around age two and sometimes they do not present for an evaluation until the teen years, but generally many children are evaluated between three and ten. Factors identified by Daniels and Mandell that impact age at diagnosis include community resources, state policies, socio-economic status and severity of symptoms. Children who have more resources available in their city/state, whose families have resources and who present with more severe symptoms are more likely to receive support. Interestingly, another recent study conducted by Jang et al. in 2014 reports that parental concerns begin at 13 months of age. Taking the data together this means that at minimum families are waiting two years from the time of first parental concern until comprehensive services are available/provided. In many cases families are waiting much longer. Considering the data on early intervention and optimal outcomes, families are done a great disservice when it takes years to be diagnosed. Also, many states provide support to young children (for example here in Colorado waiver support is provided until age three and then waitlists and certain criteria exist for services after three). Considering this data, very few children will be diagnosed before age three even while we know that parents have been voicing concerns since thirteen months.
At Emerge we receive referrals from many wonderful pediatricians for consultations and evaluations for young children. We hope that we will see that trend continue. As parents if you have concerns don’t hesitate to seek an evaluation. At the very least this will provide an update on development, recommendations, resources and peace of mind. If there is a need for treatment research shows us that intervening early is the best way to go.