There are many ways that evaluation and testing can take place to get a diagnosis of an autism spectrum disorder. Let me first say, that whenever the possibility begins to get raised of the autism spectrum, I suggest from then on only seeing professionals who have substantial experience in this area. Over the past few years, the number of people familiar with the spectrum has greatly increased, but still, not all professionals know what they are doing in this area. Ask the person you are seeing how many people have they seen on the autism spectrum or if they have significant training in ASD issues. This may be even more important when an adult is getting diagnosed, since although more child providers are becoming familiar with the spectrum, I still find that adult providers are still not that knowledgeable. I have great difficulty finding adult therapists who specialize in this area, and have had little success with finding adult therapists to transfer my ASD teens to once they become adults and are supposed to be moved on out of our clinic (which is part of a large children’s hospital). If someone says they don’t know much about autism, see if they can help you find who does, or hit the web. Others parents may be the best source of referrals for providers with whom they feel comfortable.
Let’s assume for this post that we are looking at a diagnostic workup for a child. I like to recommend a multidisciplinary team. Ideally, one member of the team would be the child’s pediatrician or perhaps a specialist such as a developmental pediatrician. We want to make sure the medical component is being covered. There are several medical conditions that are associated with the autism spectrum and those need to be ruled out, and genetic testing may be relevant as well, to check for such conditions as Fragile X. Hearing should be evaluated as part of the work up.
A speech and language pathologist is often an essential team member, to look any possible language problems. Since addressing language delays immediately and intensively produces the best outcomes, if your child’s language is delayed do not listen to advice telling you to wait several months or a year or two to see what happens (I have known of parents told this over and over). Have the child evaluated by a early intervention specialty team that includes a speech and language pathologist, who can be the one to tell you whether intervention is recommended. You do not want to miss the window of opportunity that occurs to address these deficits during the preschool years. In the US, school districts have specialized early intervention programs for this process.
Checklists versus testing
You may find doctors, therapists and other professionals who administer screening checklists to look for autism spectrum symptoms. In the case of some on the spectrum, where the symptoms are quite pronounced and there would be no doubt that what we are seeing is an autism spectrum disorder, these screening checklists may be sufficient. However, a full work up would include actual psychological testing. The most commonly used tests for a full work up are the ADOS (Autism Diagnostic Observation Schedule) – and the ADI-R (Autism Diagnostic Interview – Revised). The ADOS is a structured interview, with different modules for different ages and levels of verbal skills, that is done with the person who may be on the spectrum (not with the caretaker). During the administration the tester provides presses for different behaviors, and then rates the person being tested on these. For instance, the child (or adult, since their are modules for both) is rated on use of social overtures, eye contact, gestures, emotional insight into the nature of relationships, and other diagnostic criteria. The ADI-R is a detailed developmental history that is done with the parent to look for a history of developmental differences and delays. These two tests can lead to ruling in or ruling out a diagnosis of an autism spectrum disorder.
Cognitive and achievement testing
I also recommend that cognitive and achievement testing be done at the same time if the child is old enough to be tested. These psychological tests may be done by a school psychologist or by someone in a mental health clinic. Again, make sure they have some experience with this. If they are an intern testing under the supervision of someone more experienced, then make sure the supervisor has done many of these types of evaluations before. It doesn’t hurt to ask around about any potential biases. As I said in an earlier post I can more often tell what the diagnosis will be by the person doing the testing, then the person getting tested. Many people in the field have a bias in one direction or another.
This testing component to the diagnostic workup is crucial, since ideally the testing will lead to a comprehensive written report that will include detailed educational recommendations that can be used to develop an educational plan (an IEP or 504 if in public school – much more on this in later posts).
Other professionals involved may include physical therapist and occupational therapists to diagnose and treat motor coordination problems and sensory problems and psychiatrists to diagnose and treat associated symptoms (remember, as of now there is no medication to treat core ASD symptoms, so medications are addressing associated symptoms such as attention, aggression, or anxiety). Psychiatrists can also diagnose ASDs themselves, but most will use testing to confirm the diagnosis. Additionally, psychotherapists from various backgrounds, such as licensed clinical social workers (such as myself!)or licensed professional counselors may be part of team assisting with the diagnosis and providing treatment services.
In my next posts I will address evaluations of red flags for very young children and evaluations for adults.
Question: If you or someone in your family was diagnosed on the autism spectrum, what occurred during that evaluation process and how satisfied were you with the outcome?