Navigating an Autism Diagnosis

September 08, 2021

What is Autism?

Autism Spectrum Disorder (ASD) is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behavior.

To receive a diagnosis, children need to be seen by a psychiatrist, developmental pediatrician, neurologist, or a psychologist to have testing completed. Most commonly, the Autism Diagnostic Observation Schedule (ADOS) is used along with other testing to confirm an ASD Diagnosis.

What are common symptoms of Autism? How do I know if my child has Autism?

The following may indicate your child is at risk for ASD. If your child exhibits any of the following, ask your pediatrician or family doctor for an evaluation right away.

AGE	WHAT TO LOOK FOR
By 6 months	Few or no big smiles or other warm, joyful and engaging expressions Limited or no eye contact
By 9 months	Little or no back-and-forth sharing of sounds, smiles or other facial expressions
By 12 months	Little or no babbling Little or no back-and-forth gestures such as pointing, showing, reaching or waving Little or no response to name
By 16 months	Very few or no words
By 24 months	Very few or no meaningful, two-word phrases (not including imitating or repeating)
At any age	Loss of previously acquired speech, babbling or social skills Avoidance of eye contact Persistent preference for solitude Difficulty understanding other people’s feelings Delayed language development Persistent repetition of words or phrases (echolalia) Resistance to minor changes in routine or surroundings Restricted interests Repetitive behaviors (flapping, rocking, spinning, etc.) Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors

Where do I start if my child is showing symptoms of Autism?

Start with a Primary Care Provider.

Advocate for an evaluation if you feel something is wrong. Ask for a referral for testing and Early Intervention (EI), if child is under 3 years old. EI programs can be found on Mass.gov. Depending on wait times, EI will pick up the case and assign a specialist to come to your home and meet your child.

Evaluation looks like playing with your child. The evaluating team will start with skills below age level and work up to see where the child lies on the developmental continuum.

What happens after the evaluation?

If your child meets the criteria – by showing a delay in an area – the specialist will create an individualized family service plan (IFSP) to include adjunct-needed services determined by the evaluation, like speech, occupational therapy or physical therapy. EI may also refer for further testing through your insurance coverage.

Once your child is 2 1/2 years old, EI will refer them to the local education team for school to take over services and needs at 3 years old through an individualized education plan (IEP).

If your child is over 3 years old, you may have to wait for testing for quite some time. Submit referrals to multiple testing sites if you can. You can find out who is in network through your insurance company.

Which providers can do further testing and what comes after?

A Developmental Pediatrician (medical provider)
A Neurologist (medical provider)
A Psychologist (behavioral health provider)
A Psychiatrist (behavioral health provider)

While you wait, apply in writing to your school department for a full psychological testing battery to include specialized evaluations for things like speech, occupational therapy and testing for cognitive ability.

Once testing through school is completed, a team meeting will be held to determine eligibility for special education services, classroom placement and IEP creation.

Once full testing through the outside provider is completed, if autism spectrum disorder is determined, you can refer to an agency for Applied Behavior Analysis (ABA) services if your insurance carrier covers this service.

What should I tell my pediatrician?

Give your pediatrician detailed information about your child’s behavior.

Use phrases like:

“My child was speaking and now he is not.”
“My child lines their toys up rather than playing with them.”
“My child will only eat fish crackers and chicken nuggets.”
“My child does not respond to their name.”

The more detail and context you can provide for your concerns, the better the picture you create for the pediatrician.

Do not hesitate to ask your pediatrician to conduct a routine developmental screening. And do not be afraid to ask any question you may have.

What questions should I ask my pediatrician?

What are the milestones I should see now or expect to see for my child?
What do I do if we pass the age without meeting a milestone?
What do I do if my child loses a skill or words?
What are some alternative answers for this behavior other than autism?
How can we decipher the need and the treatment?
What are my next steps? Can you refer to multiple places for an evaluation/EI?

Are there resources available to learn more?

There are many resources available to learn more about ASD and what to expect. Here are a few:

Article Sources:

Beacon Health Options

Autism Speaks

Autism Action Partnership

Centers for Disease Control & Prevention