If you choose to work with children, you will undoubtedly encounter children with autism spectrum disorder (ASD). The Center for Disease Control currently estimates that 1 in 68 children have ASD. Since symptoms can be seen as early as 6 months, early identification of autism is key for providing care.
For new clinicians noticing red flags, this can be a difficult topic to broach with families. You may find yourself second-guessing your clinical opinion and/or wondering how to address what you’re seeing.
It’s easy to ‘pass the buck’ and let other professionals take the lead on this topic; however, when approached gently in a structured and thoughtful way, the service provider can ease the family's’ burden and take on various and necessary support roles throughout the process of diagnosis.
In order to be confident in your clinical opinion, you must first objectively observe your client’s behavior. Be sure to note the child’s positive and negative social communication skills and attend to any repetitive behaviors and/or restrictive interests they may have.
If you have concerns about one of your clients, suggest the family complete an online screener like the Modified Checklist for Autism in Toddlers (MCHAT). The MCHAT is a short, 20 question checklist designed for children between 16 and 30 months of age.
Upon completion, it provides a risk level for autism to determine whether or not a referral to a developmental pediatrician/pediatric neurologist in necessary to seek a further diagnostic assessment.
As the prevalence of autism diagnoses have increased, so have the number of personal experiences our families have had with ASD. Most families have a relative/friend with autism or at the very least have seen something about autism in the media. Try to have a short sentence to define autism in a simplistic way for families.
For example, “autism is a disorder that affects how children communicate and interact with the world around them.”
Be sure to explain that there is no fault in an autism diagnosis - the family DID NOT do anything to cause this. It may be important to explain why autism is considered a “spectrum disorder” and that each person with autism is different. The role of educator may become more specific as a family learns more and meets other people with diagnoses.
They may have specific questions about diet change or sensory needs. Be knowledgeable of evidence-based practices and understanding yet skeptical of hopeful “cures” as the family searches for ways to better their child.
Learning their child has a disability (as opposed to a delay) can send parents through a grieving process, similar to the loss of a loved one. Emotions such as denial, anger, bargaining, and depression are common before acceptance occurs. It is important for the provider to understand that the family is experiencing a loss of what they thought their future would look like.
Instead of envisioning weekly soccer games they may now be envisioning weekly therapy sessions. Instead of college and eventual independence, they may now see a future of dependence and unemployment.
Know that the grieving process is not linear, it’s cyclical. Various life events, for example, a low report card or an unsuccessful play date, may throw your family back into earlier stages of grief. Be a supportive listener and show compassion during these times.
There are a plethora of resources regarding ASD on the internet and it’s important that you as a speech-language pathologist be familiar with what is out there. Realize that some resources are good and some are not. Steer your families toward reputable websites, for example, Autism Speaks, ASHA, and the National Institute of Mental Health.
Many universities have a Center for Autism and Related Disabilities (CARD) program, like this one for the University of Central Florida. Help families find support groups. Encourage families to attend conferences (e.g. Future Horizons) and use technology to research prominent figures in the autism community (e.g. Dr. Temple Grandin).
Does your child go to daycare? Are they school-aged? If so, you can further advance your client’s progress by providing strategies for teachers and other school personnel. Teach them how to deal with problem behaviors. Show them how to use visual supports to aid with transitions. Discuss sensory differences that children with ASD experience and how to help ease sensory overload.
Related professionals typically appreciate the assistance and understand the importance of service coordination. If you are in a setting that allows it, get peers involved. Find helpful, caring children and use them as peer models for your child with ASD. It will provide your client with experiences more similar to their typically developing peers and help them develop important social skills.
We know that children with ASD are not a sum of their negative social communication skills and/or behaviors. Highlight the child’s positive skills to their families. Maybe their child is very detail-oriented or maybe they demonstrate above average cognitive skills.
For example, in Florida there are the McKay Scholarship and the Special Needs Scholarship that assist with the expense of alternative schools, assistive devices, therapy, etc. Find other funding opportunities in your area and provide your families with all available supports.
Children with ASD and their families can have a difficult time with the unknown factors of transitions. Help the family to understand upcoming transitions they will be facing. If you are seeing your client through early intervention, detail what Part B school-based services look like.
Talk about the structure of the school system and how therapy will look in this setting. If you are working with elementary-aged children, help them with the transition to middle school and advise them about the changes in school and social structure.
As much as I believe in the importance of early diagnosis of autism, I must acknowledge that some families are just not ready to accept anything more than a language delay. As speech-language pathologists, we are used to working with children with various disabilities.
We are desensitized to the stigma surrounding disability because we work with these children and their families every single day.