Chapter 2
The Importance of the Autism Referral

In graduate school, I was trained to identify and diagnose the problems with which my patients present with. Psychologists are taught to do this through a combination of observation, interview and, at times, psychological testing instruments. In this process, we are taught to assume that the information we receive is presented in an open and honest manner through which it is seen that the patients and/or their family members are truly interested in understanding the cause of the presenting problem and the ways in which it can be remediated. While I believe this is the case for most evaluations, it is not always so when dealing with autism spectrum disorder (ASD). Because of that, several factors need to be taken into account before the first meeting with the patients and/or their parents.

Where Did the Referral for This Patient Come From?

This is a very important question that needs to be considered because it could have a direct impact upon the doctor's evaluation. A typical referral comes from the parents, requesting an evaluation for their child.

In my position at Kaiser-Permanente, I receive referrals from parents in one of two ways, either through a phone call directly from the parent (typically the mother, which will be discussed in greater depth later in this chapter) or through a professional, such as a pediatrician, speech therapist, neurologist or mental health professional, stating that they or the parents (or sometimes the patient, depending upon their age) are interested in an evaluation. These types of referrals typically indicate a significant amount of interest from the patients and/or their family in the evaluation. In these situations, it would be quite reasonable to believe that the patients and their parents would provide the examiner with a great deal of useful and factual information, necessary for an appropriate diagnosis.

I also receive referrals from care providers, such as the professionals mentioned above, in which the intent of the evaluation is not completely apparent, for one reason or another. There are times when the referring professional does not have a specific concern to articulate to the parent: "Well, Mrs. Smith, I don't really know why Ralph isn't talking [or banging his head against the wall, or wandering away from you whenever you take him outside], but it may be helpful for him to be seen by our specialist in that area." It may also be possible that the provider does not feel comfortable using the "A" word (autism or Asperger's) with the parents and simply says something to the effect of "I think it may be helpful for Ralph to be seen by a specialist. Luckily, we have such a person here in our clinic. I will make a referral for you if you would like."

When you meet parents who have been given a rather ambiguous referral, you may need to start out with rather general questions, or even "beat around the bush" for a while to obtain information about their understanding of why they are seeing you. I have found the following non-threatening statement to work well: "I received a referral from Dr. Jones about Johnny. What kinds of things are going on?" As the evaluation progresses, more information about the referring professional's, and the parent's, concerns becomes apparent. One can then proceed to ask more autism-spectrum-specific questions or get the parents to talk about those areas. If within the first minute the parents state, "Well, Dr. Gallo, I think Dr. Jones was concerned because I told him Johnny wasn't talking and doesn't have any friends," I think we know where this evaluation is headed.

It is quite common for parents to have different reactions with regard to a referral being made for their child. The following are examples of some types of parents one may encounter.

The reticent parents

Sometimes the most difficult referrals are those in which the parents have been told by the referring professionals about their concerns, but the parents do not agree with it. The following conversation exemplifies such a situation.

The parents with pre-formed opinions

If the parents, or the patients, come to the evaluation with a preconceived notion about autism, such as "My child doesn't bang her head against the wall or spin plates, so she can't be autistic," they may be quite unlikely to listen to what you have to say. Much more on this topic will be presented throughout the book.

The parents in denial

These parents could present in a few different ways. One example would be a parent who comes to the evaluation and says that there is nothing wrong with their child and that they have no idea why the doctor wanted their child to be seen by a specialist for an evaluation. Another example could be a parent who doesn't want to know if there is a problem with their child - yet. They might think that if they viewed their child as "normal," then people, including themselves, would interact with him in a better manner and would be nicer to him. However, if they view the child as being disabled or "sick," it will make everyone, including the parent, sad, and their child will never be happy.

Have They Been Evaluated Previously? If So, by Whom?

In this day and age of increased awareness about mental and physical health issues, patients will often be seen by several professionals before coming to see a specialist. It is also possible that the family will have spent some time searching the Internet in an effort to obtain more information about whatever problem they think their child may have.

If you are seeing a very young child for an evaluation (one who is under the age of two) it is quite likely that the only professional they have seen in the past is their pediatrician. Quite often, the concern which first causes the parents to bring their son or daughter to the pediatrician is delayed speech. A "perfect world" scenario of this meeting with the pediatrician would go something like this: A mother brings her 18-month-old son to the pediatrician because he is not talking. The pediatrician shares the mother's concerns about the delayed speech and makes a referral to a pediatric speech pathologist. The speech pathologist, knowledgeable of the signs and symptoms of the autism spectrum, reports their observations and concerns to the mother and suggests that she take her son to a professional who specializes in ASDs to rule out such a disorder.

Unfortunately, that is often not the case. A more realistic, if somewhat negative, interaction would be the following: The mother takes her 18-month-old son, Ralph, to the pediatrician because he is not talking. The pediatrician informs the mother that "boys tend to talk later than girls" (which is true) and tells her not to worry. The mother feels relieved because the pediatrician is the professional to whom she turns for answers. Since the doctor is not concerned, the mother is no longer concerned. The mother takes Ralph back to the pediatrician 6 months later and again 12 months later with the same concerns. Finally a referral is made to a speech pathologist. A referral to a Regional Center for a closer look at his language delay may also be made. (In California, Regional Centers are non-profit private corporations which contract with the Department of Developmental Services to provide or coordinate services and support for individuals with developmental disabilities. The Regional Centers are present throughout California as a local resource for individuals and their families. These facilities may have different names in other states, such as the Office of Mental Retardation and Developmental Disabilities in New York, the Agency for Persons with Disabilities in Florida and the Texas Department of Aging and Disability Services. Outside America, such centers may be called something else entirely.)

The speech pathologist who evaluates Ralph determines he is delayed in expressive and receptive language by a certain number of months. On the report, the speech therapist notes that Ralph did not make eye contact with her, only wanted to play with certain toys and became quite upset when redirected. The speech therapist may or may not mention these factors to the mother as additional areas of concern which warrant further evaluation. If Ralph were under the age of three, he could have been found eligible for services available at the Regional Center. If he were over the age of three, he could be referred to the local elementary school for an evaluation and be provided with services for his speech delay.

It may be a long time before Ralph would be seen by a professional who knows which signs and symptoms are suggestive of autism. It is also possible that the parents have obtained enough information on their own to suspect that their son may have autism and hence request an evaluation.

The older the individual becomes or the more impairing the symptoms are, the more likely it is that they will have been seen by several professionals, including speech and language pathologists, occupational therapists, psychologists, psychiatrists and...