Reflections from the field - Autism: How is it Diagnosed and What does a Diagnosis Change?

By Alicia Giannelli, EC-SEAT Scholar

When I think of Autism as an educator, many questions come to mind. Mainly, how are children diagnoses, and how does their age at diagnosis affect them? Also, does a diagnosis change the situation for families and adults?

“The American Academy of Pediatrics recommends that ALL 18- and 24-month-olds be screened for ASD during regular health visits” (Stenberg, 2014, p255) because autistic behaviors can sometimes be observed as early as one year old. When the Modified Checklist for Autism in Toddlers (M-CHAT) screening takes place, there is a 23 yes or no questionnaire that parents answer and six critical items. These items are “‘imitation’, ‘interest in other children’, ‘initiative to joint attention (point for interest)’, ‘response to joint attention (follow point)’, ‘show objects to others’ and ‘response to the name” (Stenberg, 2014, p256). If a child fails 2 out of the 6 critical items they are labeled as at risk for autism.

It is shown “that screening with M-CHAT alone in a general population at 18 months is not effective in identifying the majority of children who ultimately receive a diagnosis of ASD” (Stenberg, 2014, p259). This could be from parents not recognizing the behaviors or the age of the child. Screening at 30 months may be more effective because “ASD is a developmental disorder, which implies that the signs manifest themselves only when the child has reached an age when certain behaviors are expected to be present. The signs will, therefore, become increasingly evident with increasing age and might not be fully manifest or recognizable at 18 months in all children with ASD, particularly in children who have IQ and language skills within the normal range” (Stenberg, 2014, p259). Often times, parents do not even know what to look for in their children until they are around other children and acting a little differently.

Is a diagnosis needed for these children to get the support and education that will help them thrive later on in life? In the US, with the current infrastructure, yes, a diagnosis is often needed. In order for a family to get the support and help needed, they have to have some sort of diagnosis or recognized delay. Even if a child is not diagnosed with autism, they are still able to get some early supports and services if the child is found to have at least a 33% delay in their development. Once the delay is recognized, the family qualifies for some services from the state, mainly paid for by insurance. These services are to help support the family and teach them new skills to better support their child. The early supports and services are often not as intensive as a child with autism would need if the child does not have a diagnosis. Before diagnosis, a child would get an hour of services a week from early supports and services. If more services are desired, the family would have to pay for these themselves.

Children are the main focus for both parents and educators. We all want what is best for the child, whether they are diagnosed or not. Educators are just one support system for families in their special education journey. We can help these families find more based on their needs and desires for their families. In my eyes, it does not matter if a child is diagnosed or not, I just want to be able to give them and their families the skills necessary to be successful and to achieve their goals. I do not want a diagnosis to define the child or family but to just be a part of who they are. A part of them that helps explain some parts of who they are. Educators can help families and children get the support they need. There does not need to be any diagnosis to be a strong teacher and support system for the families in your care.

Resources

Arnold, L. (2016). Rethinking autism, diagnosis, identity and equality. Good Autism Practice, 17(2), 100–101. Retrieved from http://search.ebscohost.com.unh.idm.oclc.org/login.aspx?direct=true&db=eue&AN=124064788&site=ehost-live

Loomes, G. gl739@york. ac. u. (2017). It’s only words: a critical “insider” perspective on the power of diagnosis in the construction of autistic social identity. Good Autism Practice, 18(1), 20–24. Retrieved from http://search.ebscohost.com.unh.idm.oclc.org/login.aspx?direct=true&db=eue&AN=123875598&site=ehost-live

Pierce, K. E. gov. u., & Lyons, R. (2019). Parent training programmes in the early years: benefits and recommendations from an evaluation of the Incredible Years Programme for Autism and Language Delays. Good Autism Practice, 20(1), 50–65. Retrieved from http://search.ebscohost.com.unh.idm.oclc.org/login.aspx?direct=true&db=eue&AN=137903277&site=ehost-live

Sileo, N. M., & Prater, M. A. (2012). Working with families of children with special needs: family and professional partnerships and roles. Boston: Pearson.

Stenberg, N. , Bresnahan, M. , Gunnes, N. , Hirtz, D. , Hornig, M. , Lie, K. K., Lipkin, W. I., Lord, C. , Magnus, P. , Reichborn‐Kjennerud, T. , Schjølberg, S. , Surén, P. , Susser, E. , Svendsen, B. K., von, Tetzchner, S. , Øyen, A. and Stoltenberg, C. (2014), Identifying children with ASD at 18 months. Paediatr Perinat Epidemiol, 28: 255-262. doi:10.1111/ppe.12114