Autism: Next, The Diagnosis

If you receive a diagnosis of autism for your child, it may well be the most difficult thing you encounter on your journey through the world of parenting a child with autism. This is the second blog post in our autism series, and it is intended to help you learn about what you might expect as you approach the diagnosis.

Autism spectrum disorder, or ASD, can be a medical diagnosis or the educational identification of a disability. In schools, ASD is determined by a team. The formal assessment is conducted by the school psychologist, an educational diagnostician, and a speech-language pathologist. The informal assessment consists of the valuable information provided by the parents and teachers and others who have direct knowledge about the child. The team uses both the formal and informal evaluations to determine if a disability exists that interferes with the child’s educational success.

Medically, the diagnosis of ASD is organized by a physician and/or mental health professional, such as a psychologist. Your child’s pediatrician or primary care physician will probably refer you to a psychologist who specializes in the diagnosis of autism. A speech-language pathologist (SLP) and/or occupational therapist (OT) may also be members of the diagnostic team. Many direct and indirect assessments are available, and the specialist will select assessment tools and materials appropriate for your child, including valuable information gathered from you, the parents, and school personnel.

The age that a child can be diagnosed is not set in stone; many professionals believe ASD can be reliably diagnosed by age tw0, but most children are diagnosed between ages two and four. Parents are usually the first to observe unusual behaviors that may be early indicators of autism, and they are often the ones to bring these concerning behaviors to the attention of pediatricians and family practice doctors. That being said, many parents fail to recognize the problematic behaviors. Extended family members who do not see the child every day may be more alert to delayed milestones or unusual behaviors and may be the first to express concern. Doctors are the safety net, as they are, or should be, alert to behaviors and developmental delays that may signal autism. Well-baby and well-child checkups usually include screening for general developmental milestones, and the Centers for Disease Control and Prevention recommends a specific screening for autism between 18- and 24-months.

Early diagnosis is important because autism therapy can begin at an early age. Early intervention is important and can contribute to better short-term and long-term outcomes. But, school-age children, adolescents, and adults can also be diagnosed, and it’s never too late to intervene.

Autism does not discriminate. It affects individuals of both sexes, of all races and ethnic groups, and it doesn't care if you’re rich or poor or somewhere in between. Autism can seemingly “come out of nowhere,” but research suggests that there are both genetic and environmental factors at play; therefore, there are risk factors that are associated with autism. Some examples include:

Having a sibling diagnosed with ASD
Being a boy – boys are more likely to be diagnosed with ASD than girls
Being born to a mom who is 35+ or a dad who is 40+
Having a genetic predisposition – children with ASD may also have other genetic conditions, such as Down syndrome or fragile X syndrome

Here is where I climb up on my soapbox…if, or when, your child is evaluated, in the school setting, a speech-language pathologist is required to be on the assessment team (kudos to state and federal law). However, in the medical setting, a speech-language pathologist is not required as a member of the diagnostic team. I cannot express to you how important I believe it is that a speech-language pathologist be a member of your child’s autism diagnostic team. Autism is a social-communication disorder, and although communication belongs to all of us, speech-language pathologists are communication experts! That’s what we do! And it may fall to you, as the parent, to insist that a speech-language pathologist evaluate your child’s communication skills.

There isn’t a specific medical test, like a blood test, that can diagnose autism. The diagnosis is made through a process of gathering specific behavioral and developmental information about your child. Back up on the soapbox…speech and language developmental information is very, very important to the diagnosis, and a speech-language pathologist should be involved in this phase of the assessment.

In recent years, the number of individuals, especially young children, with autism seems to have exploded. There is still disagreement as to whether this is a true reflection of an actual increase in the number of children with ASD or if the diagnostics are simply better now. I don’t have the answer, but I do know that parents, doctors, teachers, and others are increasingly aware and knowledgeable about autism. I encourage you, as a parent, to continue to learn, seek advice, and ask questions without hesitation.

In our third, and final, blog in this autism series we will talk about speech therapy for autism. In the meantime…

Please contact me to learn more.