Getting an Autism Spectrum Diagnosis / The Diagnostic Process
Autism varies widely in severity and as it is a spectrum disorder, it will present differently from one person to another and from male to female. Signs and symptoms may go unrecognized, especially if they initially appear as mild or don’t significantly interfere with daily functioning. Autism may also go unrecognized when it is masked by more prominent co-conditions.
The Process of Diagnosis
Getting an autism spectrum diagnosis is often a two-stage process. With children, the first stage involves general developmental screening during well-child checkups with a pediatrician or an early childhood health care provider. Children who show some developmental problems are referred for additional evaluation. The second stage often involves a thorough evaluation by a team of doctors and other health professionals with a wide range of specialties.
At this stage, a child may be diagnosed as having autism, developmental delay or another developmental disorder. Children diagnosed with an autism spectrum condition can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.
How is Autism diagnosed in children and teens?
Many people—including pediatricians, family doctors, teachers, and parents—may minimize signs of autism at first, believing that children will “catch up” with their peers. While you may be concerned about labeling your young child with a diagnosis, the earlier autism is diagnosed, the sooner specific interventions may begin and the sooner your child may qualify for medical or educational services.
Early intervention can reduce or prevent the more severe disabilities associated with autism. Early intervention may also improve your child’s language and everyday functional skills, also called adaptive behavior.
Screening
A well-child checkup should include a developmental screening test, with specific autism screening at 18 and 24 months as recommended by the American Academy of Pediatrics. Screening for autism is not the same as diagnosing autism. Screening instruments are used as a first step to tell the doctor whether a child needs more testing. If your child’s pediatrician does not routinely screen your child for autism, ask that it be done.
For parents, your own experiences and concerns about your child’s development will be very important in the screening process. Keep your own notes about your child’s development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your child reached certain developmental milestones.
Autism is known to run in families but may present differently from child to child. A more severely impacted younger child may get a diagnosis first and as the family learns about autism, they may come to find that another child in their family who is impacted with different levels of symptoms is on the autism spectrum too.
Types of Autism Screening Instruments
There are a variety of instruments used when screening a child for autism spectrum disorder. Oftentimes the doctor will ask parents questions about the child’s symptoms to screen for autism. Other screening instruments combine information from parents with the doctor’s own observations of the child.
Examples of screening instruments for toddlers and preschoolers include:
To screen for Autism in older children (in some places, they may also still screen for Asperger syndrome), the doctor may rely on different screening instruments, such as:
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be thorough in order to indicate whether other conditions may be causing your child’s symptoms.
For more information, see the section: What are some other conditions that children with autism may have?
A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing autism may do this evaluation. The evaluation may assess the child’s cognitive level (thinking skills), language level, and adaptive behavior (age-appropriate skills needed to complete daily activities independently; for example eating, dressing, and toileting).
Because autism is a complex developmental disability that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing. Children with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.
Although children can lose their hearing along with developing autism, common autism symptoms (such as not turning to face a person calling their name) can also make it seem that children cannot hear when in fact they can.
If a child is not responding to speech, especially to their name, it’s important for the doctor to test whether a child has hearing loss.
The evaluation process is a good time for parents and caregivers to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your child. Be sure to ask who you can contact with follow-up questions.
Diagnosis for Adults
Diagnosis can help a person to better understand themselves and make better sense of their life history. Oftentimes adults on the autism spectrum have grown up with a variety of sensory, social, executive functioning, and communication challenges and have not been able to understand why they are having challenges in some areas but not others. Diagnosis and subsequent education and support allows for opportunities for family, friends, partners and other loved ones to better understand and provide better support based on improved knowledge.
Since autism is a recognized disability, having a diagnosis may help a person access accommodations and services. Some places where services might be useful could be during college or university, social and housing services, employment, medical, mental health and other benefits agencies.
If you are an adult seeking diagnosis, the usual route to getting a diagnosis is to ask your primary care physician for a referral to a clinical psychologist or psychiatrist who has experience in diagnosing autism in adults. There will potentially be questions about your childhood and developmental years, questions you might not know the answer to. Answer to the best of your ability with as much detail as possible.
Finding a local provider who is qualified to diagnose autism in adults may be challenging, particularly autism in women. Providers who predominantly work with children may or may not accept adult patients or have a full understanding of how autism manifests in adults.
Similarly, many psychiatrists and psychologists who primarily work with adults may not have expertise in autism. It is best to contact potential providers to assess their willingness and expertise in working with adult patients on the autism spectrum. In general, diagnoses should be made using input from a variety of sources including standardized diagnostic instruments such as the ADOS or ADI-R.
Health insurance coverage for autism diagnoses varies by provider. Clinical history and observation within the context of a billable clinical visit may be sufficient to make the diagnosis but sometimes assessment may require additional testing. Coverage for mental-health visits varies by plan. Complete testing may or may not be covered by certain payers, and may require prior authorization. Vocational rehabilitative services may provide assessments that are indicated to help an individual in his or her desire to achieve employment.
Sources for this section:
AASPIRE Healthcare Toolkit: Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers
National Autistic Society: Diagnosis: The Process for Adults
References
Health-related material is provided for information purposes only and does not represent endorsement by or an official position of Autism Empowerment. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.