Effective toddler assessment is critical in light of research showing that early intervention can lead to better outcomes (Helt et al., 2008; Horovitz, 2012). Research suggests that early diagnosis, strong cognitive abilities, and solid adaptive skills may be predictive of the best outcomes (Sutera et al., 2007). Some children assessed at 2, and diagnosed with autism who demonstrated strong baseline skills in cognitive, adaptive, and motor domains, and who were provided treatment, did not meet criteria at age 4. Specifically one study shows that 39 % of a Pervasive Developmental Disorder group and 11 % of an Autistic group no longer met criteria at age 4 (Sutera et al., 2007). Research such as a study conducted by Deborah Fein’s group at the University of Connecticut may indicate that solid baseline skills and early intervention can make the difference as to whether a school-aged child has strong peer relationships and is successfully able to participate in a mainstreamed school program. Thus, early identification can be a critical factor in optimal outcomes.

Often children assessed at a young age have been referred because they have an older sibling on the Autism Spectrum. The likelihood of having an Autism Spectrum Disorder may be approximately 1 in 5 when a sibling has been diagnosed. Studies show that even when family members do not meet criteria for ASD they are more likely to exhibit traits or symptoms such as stereotyped language or challenges with pretend play. This is sometimes referred to as “The Broader Autism Phenotype ” or “subclinical symptoms of autism .” One study showed that siblings were delayed on response to joint attention and general social skill development but only 15 % of those in the study met criteria for an ASD themselves (Yoder, Stone, Walden, & Malesa, 2009). Yoder et al. found that the best predictor of later ASD diagnosis was “Weighted Triatic Communication” or a combination of language use and frequency of communication (2009). Research indicates that between 7 and 20 % of siblings may have an Autism Spectrum Disorder themselves. This is compared to a rate of approximately 1.5 % or 1 in 68 children in the general population (Centers for Disease Control and Prevention, 2014). This risk is higher for boys than girls (Ozonoff et al., 2011).

Some clinicians express concern about diagnosing “too early” but outcome research indicates that with early diagnosis there seems to be a better likelihood of treating symptoms before social and communication demands increase. Sutera et al. found that 27 % of the 2-year-olds assessed at age 2 did not meet criteria at 4 (2007). This is a better rate than the data collected by Eaves and Ho in 2004 noting that 7 % of children assessed at 2 and again at 4 moved off the Autism Spectrum. Sutera et al. found that it is difficult to predict who will benefit most from early interventions and thus “it is crucial to provide all children with intensive early intervention” (Sutera et al., 2007, p. 106). The authors recommend that it is better to treat symptoms early and hope for a considerable recovery from symptoms rather than “wait and see” if the child will grow out of certain behaviors or gain appropriate skills outside of a therapeutic setting. Unfortunately, the “wait and see” model that is often suggested by pediatricians may lead to more significant symptoms that need more extensive treatment and poorer outcomes later. As mentioned earlier in this book, the temporal horn of the brain is developing in early life, which is where emotional insight and regulation begins. In the brain of a child with autism, this process simply does not develop as it should. With intervention, emotional development can be targeted and supported, thus allowing for the child’s development to be more on-track with peers. Some studies are underway to better understand the structural and neuronal changes that when combined with maturation may change the brain and allow for optimal outcomes (Fein et al., 2013, p. 203). However, unidentified children are more likely to have visible social skills challenges and potentially develop other mental health conditions like anxiety or depression as well as oppositional behaviors, as they reach school age and social and communication demands increase. Further, time is of the essence because of the social opportunities that happen in early childhood. It is often said that a “child’s work is a child’s play.” Indeed, these play experiences at the park, and in the preschool classroom, and at family gatherings, are the blueprint and cornerstone of later social development. Children who have not been provided with early intervention often are “in their own world” or are isolated from these opportunities due to feeling overwhelmed or anxious in social settings. As such, even as the child gains skills after a later diagnosis and subsequent intervention, he or she has a lot of catching up to do. This “catch-up” discrepancy is sometimes referred to as “The Shadow Effect,” which simply means that the child has missed some of the learning opportunities that were available to non-disabled peers in early life.

It is the authors perspective that it is never too early to address parent concerns and provide evaluation data to assess progress and evaluate development in cognition, language, motor, social and behavioral domains. When evaluating very young children , who are often repetitive in language and play as part of typical development, there are a number of signs that may indicate the presence of ASD. First understanding the child’s cognitive ability utilizing a scale like the Mullen, in relationship to social skills and communication can provide noteworthy data. For example a child who has very high cognitive abilities but lacks social engagement in the form of making eye contact, sharing, initiating and responding to joint attention, is displaying noteworthy symptoms. Also a pattern of high expressive language but low receptive language may be cause for concern. Another early language symptom is the expressive-receptive discrepancy coupled with pronoun reversals. For example, the child might say, “You want a cookie,” when he means “I want a cookie.” These are noteworthy language patterns and indicate that an autism diagnosis may be relevant.

Clinicians diagnosing children under the age of 2 should be prepared to manage toddler behaviors, engage with very young children, and to obtain or analyze developmental data obtained through a test like the Mullen or Bailey. These assessments can and ideally should go quickly in order to not fatigue the child, which can lead to behavioral problems and difficulty obtaining an accurate assessment of skills. Many psychologists utilize multiple clinicians during toddler assessment. One clinician provides materials and helps with scoring, while the other clinician conducts the assessment and maintains the connection with the child. The assistant must be familiar with all of the items and materials the examiner will need to make the assessment fluid and quick. When there are behavioral challenges two adults can better manage the environment so as not to reinforce undesired behavior. In special instances when a young child has a history of very intense self-injurious or dangerous behaviors clinicians recommend including an ABA therapist with a Board Certification in Behavior Analysis to assist in keeping the child safe.

In some cases, children who are referred this young have significant symptomology and this may be the reason a child is identified early. In other cases, the child may have a few symptoms but these may be subtle and complex to diagnose. In either case, the clinician should be clear on the developmental milestones expected of a child this young. The age tables provided by the Transdisciplinary Play-based Assessment manual (Linder, 2008) may be used to identify behaviors which are developmentally appropriate, slightly behind, or significantly delayed. It is also important in toddler assessment to consider anxiety, attachment-disorders, and trauma, as potential differential diagnostic considerations (see Part IV).

Setting up the evaluation room so that it is comfortable for parents to sit and a toddler to play is important. Remove all distractions and keep non-ADOS toys locked away to help the testing go smoothly. Providing snack and juice breaks and time to bounce on a toy trampoline or sit in a spinning chair can make the day more fun. These authors find that asking parents to bring a couple of preferred snacks on the day of the evaluation avoids food preference and allergy issues.

A session may last from an hour and a half to 3 h depending on a parent’s preference and a child’s behavior. At times the examiner may shorten a session and reschedule a part of the assessment for another day in an effort to encourage the best performance from the child. The ADOS-2 T must be completed in a single day of testing but a second day could be scheduled to complete a Vineland Adaptive Behavior Scale or Mullen Scales for example.

The ADOS-2 Toddler module provides assessment guidelines, materials, and activities for children as young as 12 months of age. The ADOS-2 Toddler includes 11 tasks and takes usually up to an hour to administer (recommended 40–60 min). One or both parents must be present for the administration because parent–child as well as examiner–child interactions are scored. The authors of this text have found that many toddlers enjoy the ADOS-T activities as the play activities are filled with toys and tasks that are meant to be engaging. It is important to allow time for the toddler to warm up and see the evaluation room. Often by preparing parents in the initial session for what the testing day will entail an examiner can streamline this process and everyone is more comfortable.

The ADOS-Toddler Activities include free play, blocking toy play, response to name, bubble play, anticipation of a routine with objects and social interaction, response to joint attention, responsive social smile, bath time, functional and symbolic imitation and snack (Lord et al., 2012). Tasks in the Toddler module are coded to give higher priority to a child’s social responses and lesser priority to initiations than in other ADOS modules. Tasks assess a child’s interests, language, facial expression, eye contact, play skills, the presence of repetitive behaviors, and note the child’s response to his or her environment and to overtures from the examiner and the parent. Snacks can be used for the ADOS-2 T snack time and after activities are completed as reinforcers or breaks. The total time a toddler may be in the office will be shorter than the assessment time for an older child. The examiner codes the child’s behavior and responses immediately following administration.

During the ADOS-T, although testing strategies may be needed to manage behaviors, it is important that the examiner only provides enough support as necessary to maintain the child’s engagement. If the child wanders off for a minute, the examiner should allow this scenario to play out. Where does the child go? Does he or she go to the parent? Does he go to the door? Does he try to open a cabinet to find more toys? Does he hide under a table? That is, it is important that the examiner not “give” the child too much in the way of assistance on the tasks. The examiner should not work too hard in order to engage the child. If the child is very reserved and quiet, it is okay for the examiner to sit quietly and wait for the child to come over or to warm up on his or her terms. If the child is struggling with a task, and clearly does not initiate a request for help by pointing or giving the toy to the parents, simply wait and see if the child will do this on his or her own. It is easy for the examiner working with young children to fall into the trap of trying to assist the child too much by prompting, “help? Do you need help” Certainly, it is important to monitor the child’s emotions and not allow for him or her to become very upset and frustrated, but in obtaining an accurate sample of the child’s skills, it is vitally important that the clinician not “lead” the child. Rather, the clinician should allow the child to lead and in so doing the clinician is joining and engaging with the child’s way of navigating and understanding his world. If the child says a certain word repeatedly, or makes a gleeful noise, the clinician can simply mirror that response by using the same tone of voice or repeating the word back to him or her. As with any assessment for autism, it is important to take the time to experience and note what the interaction feels like, while taking observations on any difficulty the examiner is having connection with the examinee.

During the ADOS-2 T the authors of this text look carefully at the way a child communicates socially as opposed to functionally, i.e., getting wants and needs met. As with ADOS-2 modules for older children, it is important to see if the child uses the examiner or parent’s hand as a tool, rather than obtaining eye contact, pointing, or giving the object to the parent for help. Again, if the Mullen or Bailey data indicate the child has average cognitive abilities, these social communication deficits are of greater concern.

One author has a 22-month-old nephew rather obsessed with his toy slide. He loves to slide night and day and can do this very repetitively. Some might view this as cause for concern, but repetitive play can be part of the learning process for typically developing children. This particular nephew is engaged socially with the process of sliding. He invites others to slide too, makes eye contact, laughs, claps, and giggles while initiating and responding to joint attention bids. The slide is repetitive but the child responds to and initiates social interaction during the process. The same child says “The frog jumped out!” a punch line to his favorite story, every time he sees his aunt on Skype, video chat. He is sharing the story of the surprised frog while probably remembering that it made people laugh initially and provided wanted attention. Thus, a toddler who enjoys repetitive play or language is somewhat typical. All repetitive behaviors are not necessarily indicative of the presence of autism. However, delayed language coupled with repetitive play, poor reciprocity, and significant delays in eye contact, sharing and joint attention, are red flags for ASD. Even a few of these symptoms with a family history for ASD is cause for concern.

The codes on the ADOS-2 T result in a range of concern. “Little to No Concern,” “Mild-to-Moderate Concern,” and “Moderate-to-Severe Concern” are the ranges considered. In the validation sample for this measure, only 3–6 % of children who scored in the moderate-to-severe range were false positives for the Autism Spectrum. These data show that when administered and used correctly, this measure is valid and reliable, as young as the age of 12 months. The manual reports that there was some controversy over differentiation between autism and Pervasive Developmental Disorder (Lord et al., 2012). Currently, the controversy is no longer a concern, with the Autism Spectrum Disorder dimensional categorization put forth in DSM-5.

This ADOS-2 Toddler administration is only a piece of the data collection and should be considered along with rating scale data, parent interview, and early cognitive development. A battery may include an interview like the ADI-R, an ADOS-2 T, a Vineland Parent/Caregiver Rating form and a Mullen Scales of Early Learning. It is then up to the clinician to determine whether enough data is present to provide a diagnosis. When a child is assessed at 12 months of age and diagnosed with an Autism Spectrum Disorder it is recommended that treatment begin immediately and in fact government waivers exist in many cases for children under 3 to help fund this treatment. Re-evaluation after a year can provide data to determine whether the child continues to meet diagnostic criteria or has made marked progress in treating symptoms to the extent that criteria are no longer met. In the author’s experience, parents who have obtained an early diagnosis and treatment from a very young age, have seen their child make amazing growth and progress in just 1 year’s time. The child may go from tantrums to communication; from sudden escalations to the ability to modulate emotions, and from disconnected, to connected. This is a major reason why early diagnosis and treatment are recommended.

With children 12–30 months, the ADOS-2 T is likely to be the best measure to assess autism symptoms. When children are older than 30 months, their level of expressive language can help a clinician determine whether Module 1 or 2 would be more appropriate. Once a child has expressive language above a 4-year-old level, Module 3, for school-aged children and younger adolescents can be administered. This module requires fluent language for administration. Module 1, Module 2, and Module 3 can provide detailed information on skill development during a re-evaluation or can be used in an initial evaluation for a child aged 30 months and older.

Although some clinicians are hesitant to diagnose very young children, the importance of early identification cannot be overstated. Families and referring clinicians are well advised to pursue an evaluation if any of the aforementioned symptoms are present or there is a family history of ASD. If symptoms are significant and the child is diagnosed, a family can embark on early treatment and begin building skills toward a brighter future. If not, the evaluation can bring peace of mind and recommendations to facilitate continued growth and development. Early consultation and evaluation when concerns are present provides answers and insights to families. It is sometimes important to remind families that simply pursuing an evaluation does not mean they are essentially creating a problem that was not there before. Sometimes people feel that they are “making mountains out of mole-hills” and they worry that if they go see a psychologist, they will receive an unnecessary diagnosis. To that, the authors say, “just like having a cancer screen does not give you cancer, having an autism assessment, doesn’t give you autism.” If the child does not have autism, clients will be sent home with either a clean bill of health, or some important suggestions to help the child obtain the skills needed to be happier and well-adjusted. Having spoken to many parents who malign themselves as “overly concerned” “crazy” or “too cautious” during the referral process, the authors have been able to see the benefit of evaluating these children and providing much needed answers. The authors find that parents can gain peace of mind in seeing that their concerns are quite valid no matter how many friends, relatives, and professionals have suggested they ought to “wait and see .” Parents also gain peace of mind when presented with cognitive, language, and social data that is within age-expected ranges.

As the remainder of this book covers assessment of children and adolescents, it is unnecessary to cover those ages in this chapter regarding the lifespan. Most clinicians who work in the field of autism feel a level of comfort and familiarity with school-aged children. However, assessment of toddlers and adults is often intimidating to clinicians. As such, the next section provides a guide for accurate assessment and identification of adults with ASD.

Assessment and diagnosis were less prevalent 30 years ago. Temple Grandin’s story of her own diagnosis and treatment and her parents’ fight to determine the best supports, schools, and social outlets is a unique one (Grandin, 1995). Quite often adults with social skills deficits were labeled odd or quirky, were picked on in high school, and either became anxious or depressed. Alternately, they may have coped the best they could, finding jobs with minimal social requirements and immersing themselves in more solitary or computer-based interests. Often these adults are referred by a significant other or spouse who wonders whether the social introversion, challenges with affective expression, and highly specific areas of interest may be indicative of autism.

Other times a child has been diagnosed and at feedback a mother or father shares, “you are describing me” or “I’d like to be evaluated too.” In these cases a family may have more than one diagnosis on the Autism Spectrum in a short period of time. In other cases, an adult seeks an evaluation after a long fight with depression, massive social anxiety or challenges communicating with bosses and co-workers that impact job satisfaction and security. Sometimes these individuals have come across internet questionnaires and websites that lead them to believe they may have autism. Adults come seeking clarification as well as validation of who they are and the idea that they might not be alone. Diagnosing an adult can be powerful and helpful but it can also be painful. The diagnosis may shed light on a challenging marriage that has not been characterized by strong emotional support, understanding, and insight from the individual who has autism.

When evaluating an adult it is crucial to obtain as much detail as possible in the clinical and developmental interview so as to understand any early delays, social challenges, and restricted interests. When it is possible, interviewing a parent can be helpful, particularly if the adult is in his or her late teens or 20s. In this case, parents may provide recent insight as well as developmental history. Making the rule out between a social anxiety disorder, depression, OCD, and a personality disorder will require detailed consideration of development and the history of challenges. It can often be helpful when assessing an adult to talk to the individual’s spouse or significant other, sibling, or other close relative. Further, the individual’s own insights about why he or she feels this assessment is necessary can provide critical data for the evaluation.

The ADOS-2 Module 4 is best suited to evaluating adults with adequate cognitive and language abilities suspected of having an ASD. It involves an extensive interview of social practices, emotional awareness, self-care, and personal goals as well as history of friendships, occupation, and education. ADOS-2 Module 4 activities provide information on creativity, response to humor, emotional insight, use of gesture and facial expression, and perspective taking. This module requires fluent language skills to complete and must be viewed as part of a whole dataset in order to understand the impact of other potential emotional diagnoses like depression or anxiety. When administering this module, it is important to take careful note of the quality of the interaction and the ease or relative lack of ease in developing rapport. Often adults who have lived with autism a long time may have some appropriate communication skills in some areas or some compensatory strategies such as good manners, or pleasant small talk. However, an adult with autism will generally not be able to maintain the quality of the conversation beyond a few exchanges before becoming one-sided in the interaction, uncomfortable or confused, particularly, when the conversation veers into the domain of emotions, relationships, and abstract insights. For example, an adult with autism may be able to hold a relatively pleasant exchange but then suddenly freeze up when asked about friends, romantic relationships, or his or her own dreams and aspirations .

Adults with significantly impaired language or cognitive ability are often evaluated using the ADOS-2 Module 1 or 2. These modules offer a chance to assess reciprocity, social skills, and repetitive interests through play and creative tasks. This way, reciprocity can be evaluated without the confounding effects of language problems or an intellectual disability. Using the ADOS-2, Module 1 or 2 in addition to a language measure allows for a language disorder to be differentiated from autism. Catherine Lord and others are working on standard modifications to modules 1 and 2 so that these will be more appropriate for use with older adolescents and adults.

WPS the developer of the ADOS-2 is in the active development stages of Adapted Module 1 and Adapted Module 2 for use with adolescent and adult populations . At the time of this publication, the adapted modules are only being used for research populations and are not widely available for clinical use. Presently, modules included in the ADOS-2 are selected based on the client’s expressive language levels. That said, persons of all ages including adults and adolescents with limited language will be administered Module 1 or 2. Activities, materials, and presses in both modules are geared toward younger children. Similarly, the present diagnostic algorithm was standardized on young children. The adapted modules include changes in materials, presses, and activities, as well as behavioral codes. Changes take into account developmental appropriateness and changes in symptom profiles over time (Vanessa Hus Bal, personal communication, April 17, 2015). For example, social routines are updated to be more appropriate for adult populations, materials are larger for older populations and materials are updated to match recent changes in science and technology. Again it is important to note that the adapted modules are only available for research use. At the time of publication, the precise activities and diagnostic algorithms of the adapted modules have not been standardized.

Emotional problems and mood disorders should be considered during an autism evaluation with an adult, particularly when test behaviors raise clinical concern in the examiner’s mind. When using Module 4 these authors find that it is important to consider other emotional challenges like depression and anxiety as these may impact the flow of conversation, amount of reciprocity, use of gestures, and level of cooperation on creative tasks. Tasks like telling a story from a book and description of a picture can be very informative. If an individual really struggles to approach the story-telling task and shares comments like “I can’t tell stories” or “I’m just not creative in this way” are red flags for ASD. Alternately, if he or she describes the picture with no character development, plot or emotional identification, this behavior may be consistent with ASD. When presented with the cartoon map , clinicians should take note of an individual who lists states and capitols or comments on how large the icons are in respect to the characters or states. This may be evidence of lack of insight into the playful, or humorous cartoon task. Challenges like these would not be explained by depressive symptoms . Similarly individuals who remark that they can’t teach a task like driving or brushing teeth because they “aren’t really a talker” or “don’t really do a good job of brushing teeth anyway” are also exhibiting a remarkable challenge with social perspective taking and creativity that would not relate to depression.

Clinicians should bear in mind that poor performance on an ADOS task can be a symptom of autism or, rather, of emotional problems, depending on the specific presentation. By considering the ADOS-2 data in light of emotional questionnaires like the Beck Depression Inventory and Beck Anxiety Inventory , it is easier to determine whether mood and anxiety played a role in performance. For example, limited eye contact, conversation and gesture may be caused by depression. During administration of Module 4, it is important to take note of an adult’s ability to describe goals, personal responsibility, and friendships. A person who is depressed may have few friends but he or she should be able to speak about the nature of social relationships and describe what a friend is. An adult who describes a common-law spouse of 20 years with whom he has two children as his “roommate” is clearly missing a somewhat basic understanding of social relationships .

Taken together, a detailed interview, developmental history, and close attention to ADOS-2 Module 4 tasks taken in the context of other data collected during the evaluation, does make it possible to assess for depression, anxiety, ASD, or another neurodevelopmental disability in an adult. Providing an adult with a diagnosis on the Autism Spectrum connects him or her with a community that includes resources and supports . This clarification can also lead to better self-awareness and improved self-esteem. In the case of an adult who is married and has a family, the diagnosis can help family members better understand how to communicate and introduce him or her to support groups and community resources that may help improve relationships and prevent conflict and divorce. This new found insight and understanding may enable spouses and family members to have more compassion and understanding for the individual with autism, which can allow for greater connection and overall functioning for the entire family.

A study conducted by Jiang et al. in 2014 reports that parental concerns begin at 13 months of age. Wiggins et al. in 2006 also found concerns developing between 12 and 23 months. This study focused on a group of 8 year olds identified by the CDC database as having been diagnosed with ASD. Seventy-six percent of the children were diagnosed in clinical settings and 24 % were identified in schools. Most diagnoses were made by a clinician with a Ph.D. although neurologists, pediatricians, and psychiatrists also diagnosed autism. This study found that the concerns arose by 23 months, evaluations were conducted at a mean age of 48 months and diagnoses were actually provided at 61 months, or 5 years old. Wiggins et al. stated that the degree of impairment did impact the age at diagnosis. Taking the data together, this means that at minimum families are waiting 2–3 years from the time of first parental concern until diagnosis and comprehensive services are provided. In many cases families are waiting much longer.