ASKY – Where concerns become insights

.Autism Screen for Kids and Youth

The ASKY system was developed to help identify the need for full assessment for possible autism in children and adolescents aged 4–18 years whose behavior is of concern or who it is thought may have autism spectrum disorder (ASD; previously known as PDD, high functioning autism, or Asperger Syndrome). ASKY does not provide a diagnosis, but rather assesses social communication, restricted and repetitive behaviors, and sensory sensitivities to support decision making around the need (or not) for a full autism diagnostic assessment by experts.

Using ASKY is easy

Once you register (e-mail address and password), you will be asked for the name, date of birth, and sex of the child being assessed. The assessment questionnaire is adjusted to the child's age and refers to the child by name. You can select the pre-assessment language (currently English, Hebrew, or Arabic) and can choose to complete the assessment yourself or to forward it to someone else to fill out.

The pre-assessment consists of 30 statements

Each statement is a sentence that describes a behavior. The focus is on behaviors relevant to the current clinical criteria (in the DSM-5) for ASD. Respondents are asked to “Agree” or “Disagree” that the child behaves as described in the statement. Beneath each statement, examples shed light on various ways children may express that behavior. Respondents can mark examples relevant to their child. It is also possible to add comments, specific examples, or descriptions of the child’s behavior as free text under each statement. The pre-assessment does not have to be finished all at once. Respondents can think about difficult statements and come back to answer them later by logging into the system again. Upon completion, the ASKY system analyses the reported behaviors, calculates the result using a unique algorithm, and produces a detailed report.

The report can be downloaded, saved, or printed out

It is also possible to log into the system and view the results there (without downloading them). The results include a recommendation for comprehensive assessment, if warranted, and suggest the type of specialists to consult. Where there are grounds for further assessment, the results also include a table that maps the behaviors you reported to the clinical diagnostic criteria for autism spectrum disorder. This table can support you in discussions with the child’s doctor, teachers, or diagnostic specialists.

About Us

ASKY (formerly OlaMind) was developed by Rachelle Lavi, the mother of five fabulous children, a graduate of the Weizmann Institute of Science, and a professional science editor. Rachelle repeatedly experienced firsthand how difficult it can be to communicate a child's difficulties to doctors, teachers, and others. The effort required to obtain correct, complete diagnosis and useful treatment for her children led Rachelle to research and develop a preliminary assessment method to help others in similar situations.

?Who uses ASKY

Parents

ASKY supports parents by providing an easy-to-use autism assessment questionnaire that reflects the current clinical diagnostic criteria. By comprehensively covering those criteria, it provides parents with real insight into their child's behavior. The ASKY results report supports decision making around the need (or not) for a full diagnostic assessment for autism spectrum disorder (ASD; also known as Asperger Syndrome or high-functioning autism) and provides guidance as to the type of specialist to consult.

Clinicians

The ASKY system offers an informative and user-friendly digital tool to assess social communication, restricted and repetitive behaviors, and sensory sensitivities among children and adolescents according to the DSM-5 criteria for autism spectrum disorder (ASD). The ASKY assessment questionnaire can be forwarded to your patient’s parents for them to complete on-line. The results report supports your efforts to provide evidence-based advice regarding next steps, including comprehensive diagnostic assessment for ASD, if warranted.

Educators

Teachers and other educational staff working with children may encounter students who struggle to correctly interpret and engage in social communication or whose behavior is inappropriate. Teachers can suggest that the child's parents use ASKY and/or use it themselves to gain a better understanding of the child's difficulties and to support fruitful parent–teacher discussions of the child's needs and how to meet them.

ASKY’s Reliability

ASKY’s reliability was evaluated in comprehensive research in which parents submitted questionnaires regarding 197 children aged 4–18 years. Some of the children had a diagnosis of Autism Spectrum Disorder (ASD Group, 65 children) and some did not (132 children). Of the group with no ASD diagnosis, 77 had no diagnosis at all (TD Group) and 55 had one or more diagnosed conditions with symptoms that resemble those of ASD (OTHER Group). The research assessed whether ASKY’s recommendation matched the actual diagnosis, that is, whether ASKY recommended ASD assessment for a child known to have ASD, and did not recommend ASD assessment for children who did not have ASD.

Preliminary results analysis showed that, when the potentially ‘confusing’ children who have diagnoses for non-ASD conditions are included, ASKY identifies the presence of ASD in 92% of instances (i.e., ASKY’s sensitivity is 92%) and that ASKY excludes the presence of ASD when it is indeed not present in 76% of instances (i.e., ASKY’s specificity is 76%). In the research, the proportion of children with non-ASD diagnoses was many times greater than their percentage in the general population. When they were excluded and only the “clear cut” ASD and TD groups are included, ASKY correctly identified children without ASD in 87% of cases, and correctly identified those with ASD in 92% of cases.

These are very good results for a questionnaire of this type.

In the framework of this research, it was not possible to assess whether children in the OTHER Group for whom ASKY recommended ASD assessment actually have ASD. It is likely that this group included several children who accumulated diagnoses over time without the possibility of ASD necessarily being considered and, indeed, many children in this group had four or more diagnoses. The ASKY system has the potential to help such children by identifying whether there are grounds for assessing them for ASD.

Note that ASKY does not provide a diagnosis. Only a trained and authorized clinician may provide a diagnosis. Rather, ASKY aims to map out children's difficulties in the areas covered by the current (DSM-5) clinical diagnostic criteria for ASD. In this way, ASKY seeks to provide evidence-based support when there are concerns about the behavior or development of a child or adolescent, and to provide insights about next steps.

?Why diagnose

In many children and adolescents, autism or social communication challenges are camouflaged. That is, they look like something else, such as difficulty concentrating, obsessions, lack of initiative, or anorexia. These children and adolescents may experience great difficulties in school, with friends and peers, and at home. Often this happens even though they already have one or more other diagnoses and have been receiving the corresponding treatments.   

The following stories are based on real-life cases that show the importance of a full and thorough evaluation to reach a correct diagnosis and obtain helpful treatments. Names and other details have been changed to protect personal privacy.

Personal Stories

Sam
Sam seemed hyperactive already in the womb, screamed when his diaper was changed and resisted wearing clothes. At 18 months, if he woke up in the middle of the night he would go to the kitchen, climb onto the counter, and empty the upper cupboards—so his parents were woken by the sound of breaking glass rather than by a little one climbing into their bed. He showed zero interest in playing games or listening to stories. If he got angry, offended, or even just bored, he would leave the house or park suddenly and without any warning.

Sam was diagnosed with ADHD and sensory sensitivities when he was just two and a quarter. Nobody suspected social communication disorder or autism. It took three more years before his mother started searching for the meaning of his behaviors. When she suggested the possibility of autism to Sam’s pediatrician and to the social worker who was supporting the family the idea was dismissed by both. “He makes good eye contact” they both said.

At the age of five, Sam was formally assessed by specialists who diagnosed him with Autism Spectrum Disorder. This opened the door to specialized treatments that truly pushed Sam forward.

ASKY is now available and can be used by concerned parents of children like Sam to help them turn their concerns into insights, communicate their concerns to clinicians, and support them in deciding whether formal assessment is needed.
Abe
Abe would run over to people and bite them. In the park, he would chase after dogs to pull their tails. In picture books, he couldn’t tell the difference between a smiley and a frown, or between happy surprise and horror. At age four, walking with his mother, he suddenly ran into a bakery and threw plates on the floor. When his mother grabbed him and told him she was very angry with him, he laughed and said she was not. He said she couldn’t be angry because her expression didn't look exactly the same as the picture of an angry face in the Learning-About-Emotions corner at kindergarten.

A psychiatrist diagnosed Abe with ADHD. That explained his restlessness but really did not explain any of the other concerning behaviors. They received parenting advice from a social worker who said everything else was explained by his being anxious. But faithfully implementing the social worker's parenting advice to reduce Abe's anxiety and control his wild behavior just made Abe's behavior much worse. Suspecting that Abe might have social communication issues, his parents approached a treatment center that ran classes to teach social communication skills to children. When the center would not agree to see Abe unless he had a formal diagnosis for a disorder affecting social communication, Abe's parents reluctantly had him assessed by a neurologist and psychologist who were specialists in social communication disorders. They diagnosed Abe with ASD and he finally began receiving treatments that actually helped.

ASKY is designed to help parents understand whether their child’s concerning behaviors may be fueled by problems related to social communication, as Abe's were, and to assist them decide whether to conduct a formal assessment for ASD or SCD.
Jack
Thirteen-year old Jack was playing a computer game when his much loved grandmother collapsed on the floor not far away from him. He kept playing. His mother called for him to help and he was enraged by the interruption. A month later, his sister became very ill but Jack just stepped around her as she lay on the floor in his bedroom, waiting for an ambulance. Asked about this later, he said he had not noticed that she was ill or that an ambulance arrived. Jack had a psychiatrist because of the Ritalin he took for his ADHD. When Jack’s Mum told the psychiatrist about the last two incidents he still did not connect them with social communication issues due to the fact that Jack had one friend and he really liked box games which require social interaction. Despite of that, and because of Jack Mum’s concerns, the psychiatrist referred Jack to one of the clinics that specialized in this type of assessments.

The waiting list was long, and the assessment itself required several visits and spanned over several weeks. Eventually Jack’s parents received the shaking news: their son was on the autistic spectrum. Looking back, this insight explained many events, from Jack’s early childhood until now. When the meaning of the diagnosis was explained to Jack he accepted it well. He also realized that the diagnosis allowed him to “re-tell” many past events.

The good news? Jack received special support hours in school. He joined a course with other adolescents with ASD in which they were taught social skills and how to use them in the real world. He is proud of the strengths that he “received” with the ASD – excellent skills in mathematics, computer programming and strategy games. He understands better his weaknesses in the social area and works to strengthen them.

ASKY is a system that was developed to help parent’s like Jack’s identify the possibility of social communication or autism disorder at a younger age, communicate their concerns to professionals who work with the child and if needed, turn to formal diagnosis as a first step towards the child’s progress.
Shelley
Shelley loved hugging people and at kindergarten everyone thought she was very sweet. When she got into first grade though, her constant need to touch others started to annoy the children around her and her homeroom teacher reported that she was increasingly anxious. At home she became very violent towards her siblings. Her neurologist prescribed Respond, medication usually given to reduce uncontrollable violence, but her parents were reluctant to use it. Somehow, deep inside, they felt that something else is at the base of all of this.

Shelley’s parents heard about ASKY (formerly OlaMind) from a friend. They decided to try it out as it only required 20-30 minutes of carefully responding to an on-line assessment. When they received the ASKY report it was difficult for them to read its interpretation of Shelley’s behavior. Never the less, they followed through on ASKY’s recommendation, found a specialist with significant experience in performing autism assessment with children who have high intelligence, and got a formal diagnosis for ASD.

Today, Shelley is a nine year old who loves playing with friends. She is in a special afternoon program where she actively learns social skills. She better understands what acceptable social behaviors are and consequently she is better accepted with her peers. Understanding her need for structure and planning reduced her overall anxiety which almost eliminated her aggression. ASKY was the first door to understanding Shelley’s challenges and providing her with tools to overcome them.
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Frequently Asked Questions

ASKY is for use with children and teens who have difficulties with social communication. For example, they have difficulty understanding what others are trying to tell them and others have difficulty understanding what they think or feel. Often, others first notice the associated behavior or sensory sensitivities of such children and teens, rather than their social communication difficulties. ASKY covers all these areas.

After using ASKY, you'll have a good idea of the specific areas in which your child has difficulties, of what the child's pattern of difficulties may be called, and of what types of specialists know how to assess such difficulties. You'll also have a useful report that you can print out to guide your conversations with the child's doctor and others (e.g., psychologists, occupational and speech therapists). If your child does not appear to have difficulties in the areas examined by ASKY then you will be told so.

ASKY is especially helpful in such cases. ASKY was designed to help parents and other concerned adults who switch back and forth between suspecting there might be a real problem thinking maybe this is normal or the child will grow out of it.

Or who are sure there's a problem but have no idea what it might be, and therefore have no idea where to start getting effective help for the child.

Or whose child has been diagnosed with some condition (or with a whole shopping list of conditions) but who are not convinced that the child's diagnosis is correct.

Or who see that treatment for the condition(s) the child is already diagnosed with is not helping the child much.

Yes. ASKY probes social communication difficulties and associated behaviors and sensory sensitivities. The ASKY report gives you a full picture of these difficulties with respect to your child. You can then take your child's difficulties into account on a day to day basis. This is an essential first step for all children and, for a few, it may be all that's required.

Children who are easily enraged or who withdraw and avoid others their age may blame their situation on everyone else being "stupid," "liars," or "horrible." The ASKY preliminary assessment can tell you whether the child has social communication difficulties. Such difficulties can set the stage for rage and withdrawal. With this information in hand, you can make a better decision as to whether to take the child for a comprehensive diagnostic assessment, you will know what sort of specialists to turn to, and it will be easy for you to explain what the issues are by giving them the detailed ASKY report.

The purpose of ASKY is to provide a way for adults, especially parents, to understand their child's difficulties and communicate them to others. ASKY does not provide a diagnosis and does not replace one. For more information, see the next FAQ.

Wrong. ASD can only be diagnosed if, in addition to having (now or in the past) social communication and behavioral/sensory symptoms that are causing problems, the child also had these types of symptoms (to at least some extent) when s/he was very young (i.e., during early development) and if it's not something else.

There are many conditions with overlapping symptoms.
For example, extreme long-term anxiety can cause children to avoid looking at people much of the time. This in turn means they will miss out on most social cues and gradually their social skills will fall behind those of their age group. They may also adopt various nervous mannerisms or repetitive behaviors to try and control their anxiety. These children may look like they have ASD, but actually their social learning ability is just like that of most other children. So, if you treat their anxiety then you should see big improvements in their social skills.

Another example—severe ADHD can cause children to fail to notice social cues (which will delay their social learning) and to act before they think (so their response may be inappropriate). These children may look like they have ASD, but actually their social learning ability is just like that of most other children. So, during periods when their ADHD is under control (e.g., when they are on meds) then you should see big improvements in social functioning.

Many other conditions also overlap to a greater or lesser extent with ASD. Specialists with a lot of experience in ASD are best able to reliably diagnose whether the child's difficulties come from ASD and/or something else.

So long as children feel okay in themselves and so long as their relationships within the family, friends, and at school are okay, then there's probably no need to proceed to full assessment of suspected social communication issues.

Instead, continue keeping an eye on the situation. Children with social communication issues can deteriorate very fast from "getting on well" to "crash and burn" so that children who were doing fine at age four (say) may struggle by age seven and cause alarm at around age nine. A major reason for this can be an increasingly large gap opening up between their social skills level and the level everyone else their age is operating at. Doing ASKY's preliminary assessment helps you understand what to pay attention to and empowers you to seek specialist advice in a timely manner if your child's situation changes.

The only reason to get a diagnosis is if it will help the child. If it won't help the child, there's no point getting him or her diagnosed. The possible downsides of getting a formal diagnosis—stigma and narrowed horizons—are well known and tend to dominate parents thoughts at first. So for diagnosis to be worth it for your child, the advantages need to outweigh these disadvantages (which can also be managed somewhat).

The major advantages of having social communication issues formally diagnosed are that:

A formal diagnosis grants the education system more flexibility with respect to your child by enabling teachers to take your child's communication difficulties into account—for example, by explaining things in a more concrete way, adopting different teaching methods, and by being less quick to blame the child and more understanding. For children in mainstream schools, formal diagnosis also provides access to in-school help (from the addition of a teacher's aide, to more time to complete tests, to dedicating school hours to teaching social skills and more).

A formal diagnosis grants access to effective treatment options. Treatment for social communication challenges involves teaching social communication skills. There are some very effective programs around, but often children cannot access them (not even privately) until their communication issues have been formally diagnosed.

A formal diagnosis helps increase the effectiveness of treatments for other issues that may accompany social communication problems. For example, a diagnosis of social communication challenges can influence the way attention deficits, hyperactivity, eating issues, anxiety, and depression are treated.

A formal diagnosis can enable your child to meet others like him or her. This can be a very validating experience for the child. Formal diagnosis also opens up access to information and support groups for parents and siblings.

If your child needs any of the above, then getting a formal diagnosis is likely to be worthwhile.

Teenagers may be very resistant to the idea of assessment and diagnosis. This is particularly likely if they think all the difficulties in their lives are caused by others, or if they do not recognize that they have difficulties.

Ideally, you would take your teen to a doctor or psychologist with a lot of experienced in assessing social communication in teens. In that case, get the clinician's advice regarding what to say to your teen and when. If that is not possible, then be as matter-of-fact as possible and do not give more information than the teen asks for. For example, say: I'm taking you to see someone who understands social communication. If the teen wants to know why, then give reasons connected to things that are important in the eyes of your teen.