About Autism

This section will be all about the most commonly asked questions about autism and you will find the answers here to these questions as I answer these to you all.

Disclaimer :

Just as a content warning, that I’m no medical doctor, I am just your normal Jo Bloggs so if you see any signs and symptoms in the past or present that I’ve maybe shared on my blogs, vlogs, etc, do seek medical help or second opinion as I don’t condone self-harm.

Some of the advice and tips being shared is from my lived experiences with autism so, please take it for a grain of salt if you don’t agree with something that I share that’s fine, as long as we come to terms that we can agree to disagree and disagree to agree.

Some of the information I will be sharing here will be from different sources and that there are limited resources here in New Zealand. Also, there are many different autistics on the spectrum, and that we need to be sure what to call them as they have certain preferences to be called, so please ask the autistic first and be respectful to what they share with you.

Some of the signs and symptoms that children show will vary from person to person, so again do seek professional advice. Also, the term autism has been interchanged to what it should be called for people who are on the autism spectrum.


How do we get an autism diagnosis?

Autism cannot be diagnosed through a simple blood test or examination. Instead, autism is diagnosed using observation and looking at developmental history. There are two main diagnostic manuals that set out the characteristics of autism.

The International Classification of Diseases version 10 (ICD-10) which is written by the World Health Organisation

The Diagnostic and Statistical Manual of Mental Disorders version 5 (DSM-5), which is written by the American Psychiatric Association.

These diagnostic manuals are updated every few years. When they are being updated, workgroups are formed to discuss the latest research and understanding of different conditions and whether this affects the diagnostic criteria.

Many of our understanding of autism has grown significantly over the past 40 years, and this is reflected in the changes in diagnostic criteria as new versions are released. Up until 2013, the diagnostic criteria for autism were very similar in both manuals. In the UK, both manuals can be used. Best practice guidance for diagnosing children and adults is outlined by the National Institute for Health and Care Excellence (NICE)

Diagnostic manualICD-10DSM-5
VersionThe next version released in 2017The version released in May 2013
Diagnostic termsPervasive Developmental Disorders (PDD) – a category which includes the following separate diagnoses: Childhood autismAtypical autismRett’s syndrome Asperger syndrome pervasive developmental disorder, unspecifiedAutism Spectrum Disorders: this new umbrella term is a single diagnosis that covers most of the terms listed under ICD-10. Rett’s syndrome is not included as its genetic basis has been identified and it is no longer diagnosed through observation.
Criteria usedThree main areas: Communication, Social interaction restricted, repetitive, and stereotyped patterns of behaviour.Two main areas: Communication and social interaction restricted, repetitive, and stereotyped patterns of behaviour and sensory issues.
As you can see that this is just short and brief information based on the DSM-5 and the ICD10, it shows some parts of what has changed in the Manuals.

Reference: https://jamanetwork.com/journals/jamapediatrics/fullarticle/1682335
Neuropsychopharmacology – Figure 1 for the article: Networking in Autism: Leveraging Genetic, Biomarker and Model System Findings in the Search for New Treatments

What are the three levels of autism?

Anyone who meets the criteria for having autism spectrum disorder (ASD) will be further diagnosed as having ASD level 1, ASD level 2, or ASD level 3, according to criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5).

These levels are based on a person’s strengths and limitations in regards to their ability to communicate, adapt to new situations, expand beyond restricted interests, and manage daily life. They specifically indicate how much support an autistic person needs, with level 1 meaning relatively little support is required and level 3 indicating the need for a great deal of support.

3 functional levels of autism
Illustration by Cindy Chung, Verywell

The three levels of autism make it possible for doctors to make a specific diagnosis and also helps anyone who’s caring for someone with autism to have a clear understanding of that person’s strengths and limitations. The levels reflect a more refined way of diagnosing autism than did the previous DSM.

In the DSM-IV, autism was divided into five distinct diagnoses ranging from Asperger’s syndrome (essentially a synonym for mild or “high-functioning autism“) to autistic disorder, which indicated severe autism.
*Note I did share about the terms of High functioning autism and Low-functioning autism is you would like to watch it from the playlist here: High Functioning and Low Functioning Autism/What is the Difference? https://www.youtube.com/watch?v=gSmhWW4gZ1c


Level 1: Requiring Support

Level 1 ASD is the mildest, or the most “high-functioning,” form of autism. Children with level 1 ASD have a hard time communicating appropriately with others. For example, they may not say the right thing at the right time or be able to read social cues and body language.

A person with ASD level 1 usually is able to speak in full sentences and communicate, but has trouble engaging in back-and-forth conversation with others. They may try to make friends, but not be very successful.

They may also be inflexible in certain ways and have trouble moving from one activity to another. Additionally, they may have problems with organization and planning that prevent them from being independent.

Level 2: Requiring Substantial Support

People with ASD level 2 will have more obvious problems with verbal and social communication than those diagnosed with level 1. Likewise, they will find it harder to change focus. They might, for example, get very upset when they have to move from one activity to the next or leave school at the end of the day.

Children with level 2 tend to have very narrow interests and engage in repetitive behaviours that can make it difficult for them to function in certain situations. 

A person diagnosed with ASD level 2 tends to speak in simple sentences and also struggles with nonverbal forms of communication.

Level 3: Requiring Very Substantial Support

Level 3 is the most severe form of autism. Children in this category will manifest many of the same behaviours as those with levels 1 and 2 but to a more extreme degree. Problems expressing themselves both verbally and nonverbally can make it very hard to function, interact socially, and deal with a change in focus or location. Engaging in repetitive behaviours is another symptom of level 3 ASD.

A person with ASD level 3 will have a very limited ability to speak intelligibly and will rarely initiate interactions. When they do initiate an interaction, they will do so awkwardly. Someone with Level 3 will also respond only to very direct social approaches from other people.


Limitations of ASD Levels

Although the ASD levels of support are useful for indicating where an autistic person falls on the spectrum regarding severity, they have significant limitations. They can be subjective and lacking in nuance, and the DSM-5 offers little specificity regarding the types of support indicated or situations in which support is needed—for example, some autistic people need support at school but are fine at home, while others may do well at school but struggle in social situations.

What’s more, the level a person is assigned when they’re first diagnosed can shift as they develop and refine social skills and as the severity of issues such as anxiety or depression, common among people with autism, decreases.

The bottom line: Being assigned one of the three levels of autism can be useful for understanding how high- or low-functioning someone is likely to be and determining what types of services and supports would serve them best. It won’t, however, predict or account for nuances in their personality and behaviour, which means the support and services they receive will need to be highly individualized.


Why did they make the changes in DSM-5?

Probably the biggest change in the DSM-5 was grouping all of the separate diagnoses under one single label – Autism Spectrum Disorder. This decision caused a lot of controversies, especially grouping Asperger syndrome into Autism Spectrum Disorder. The reason for this grouping was that there was no clarity on how each of the separate diagnoses differed from each other, and a number of research studies have shown that the diagnosis you receive depends on the clinician’s preference more than actual characteristics.

There are some drawbacks to having one single diagnosis, especially for research. Because every autistic person is different, classifying them into one big group makes it difficult for researchers to study smaller subgroups. Big categories mean that the groups are more variable which makes the results more difficult to repeat in future research. Researchers are working on defining smaller subgroups for research purposes (for example the Research Domain Criteria (RDoC) created by the National Institute for Mental Health in the US). There have been some different opinions based on these changes that were made as some autistics still think that one of the terms should have stayed and that is Aspergers Syndrome.


What are the causes of autism?

We do not know much about the causes of autism. We do know that there is a strong genetic basis for autism. Often, there is more than one autistic person in a family. The genetics of autism are very complicated. There is no single autism gene. Instead, there are a number of different genes which have been associated with autism. These genes work in different combinations in different people. Furthermore, research suggests that there are also unknown environmental factors that contribute to autism. What these environmental factors are is not clear, and it is likely that the genes and environment combinations which lead to autism will be different in different families.

There are a few things that we know do not cause autism:

  • Bad parenting: when autism was first identified, one of the ideas was that autism may be caused by cold and distant mothers (a theory called the “refrigerator mother hypothesis”). This theory was thoroughly disproven in the 1970s when the first studies showed that autism had a strong genetic component.
  • The MMR Vaccine: in the late 90s and early 2000s, Andrew Wakefield made claims through press conferences and research studies that there may be a link between autism and the MMR jab. These claims were found to be false, the original journal article was retracted and Andrew Wakefield was struck off the UK medical register. A large number of studies from around the world have shown no association between autism and the MMR shot. Despite the evidence that there is no link, there was for many years substantial media coverage of Wakefield’s position which caused a reduction in the uptake of the MMR jab. This in turn has caused an increase in the incidence of very dangerous diseases like measles.


What are the core features of autism and how can I help them?

Autistic people are affected in the following main areas: CommunicationSocial interactionRigidity of thoughtSensory issues. Autistic people can have an uneven cognitive profile. They can have very good communication skills and interaction skills but struggle with severe sensory issues and need a lot of structure in their daily routines.

Others may be completely non-verbal but have mastered other forms of communication such as using an assistive and augmentative communication device. They may still struggle with understanding the complexities of a conversation but have very few sensory issues.

It is extremely important to consider the impact of stress on an autistic person. We all experience stress, and It can affect our ability to think clearly, it can make us become aggressive, it can cause us physical pain and it can affect our decision-making skills. Stress impacts everyone, regardless of whether or not they have autism. Autistic people experience stress on a much more regular and intense level than the typically developing population, which can exacerbate the difficulties they already have as a result of their autism.

Communication

Communication is the exchange of information by speaking, writing or other methods. Autistic people can find some aspects of communication difficult. Communication doesn’t just cover the ability to speak, read and write, it also covers the subtleties of communication. Some autistic people, even if they are able to speak, may show some of the following:

Processing delay

This means that it takes longer to take in and process the information they are given. Processing delays can range from a few seconds to many minutes. Given the time to process the information, an autistic person will be able to respond appropriately. However, if the question or statement is repeated while the person is still trying to process the information, they will need to start processing all over again. With repeated questioning, an autistic person can become increasingly stressed and find it more and more difficult to communicate.

Supporting a person with a processing delay

If you know how long to wait, always ensure you take this into account and let others know how long they should wait. If you think the person may have a processing delay, but you do not know how much of a delay they have, wait at least 10 seconds before repeating the question.

Literal understanding

This means that a person may not understand sarcasm and figures of speech. Not all autistic people have difficulties with literal understanding. Others will be at different levels. Some may not be able to understand sayings like “It’s raining cats and dogs”. Others may wait exactly 60 seconds when being told: “In a minute”. Others may not understand the sarcastic use of phrases like “Thanks a lot” when a person has been really unhelpful.

Supporting a person with literal understanding

If you know that the person you support takes things literally, use clear, precise language. If you do not know, be considerate if they misunderstand and tailor your language accordingly as you learn more about their communication style.

Difficulty understanding non-verbal communication e.g. tone of voice and body language

Some autistic people may not pick up on these aspects of communication. So, if you are unhappy about something, they may not pick up that your arms are crossed and you are tapping your toe. They may pick up if you are using sarcasm. Finally, some autistic people can find making eye contact extremely uncomfortable. This does not mean that they are not listening or engaging in conversation. In fact, they may find it more difficult to listen if they have to focus on maintaining eye contact.

Supporting a person who has difficulty understanding tone of voice and body language

Ensure that your body language and tone of voice match what you are saying. Do not rely only on body language to get a message across. Understand that some people may not want to make eye contact.

Unusual conversation style

This covers a range of characteristics. Some autistic people use unusual phrases. They may have a monotone voice. They may speak for a long time, especially when they are talking about a special interest. They may not understand the mechanics of conversation so have difficulty with turn-taking and knowing when it is their turn to speak.

Supporting a person with an unusual conversation style

Some aspects of making conversation can be taught and the skills can be useful in job interviews for example. An autistic person should be allowed to spend time talking about their special interest. Some autistic people meet up and take part in “serial monologues” where they each monologue about their chosen topic in turn.

Generalisation

Some autistic people find generalising pieces of information very difficult. For example, if they are shown a picture of a cat and told it is a cat, they may not recognise other breeds of cats as being cats. Others may associate taxis with the traditional London black cab and refuse to use taxis that do not look like this.

Supporting a person who has difficulty generalising

Ensure that the information you give is clear and be aware of possible misunderstandings due to generalisation. Think about any photos or images you use and whether these could be misunderstood.

Non-Verbal

Some autistic people do not speak at all (known as non-verbal). Some are minimally verbal and others are able to speak but at certain times do not. Just because a person does not speak, does not mean they are not taking it in. Personal accounts from non-verbal autistic people have clearly shown high levels of ability in some areas.

Supporting a person who is non-verbal

Ensure that they have alternate means of communication that allows them to communicate to the same level that speaking would give them. This can be using tablets, computers, pictures, sign language etc.

Why is communication important?

  • You can let someone know what you want (or don’t want)
  • You can ask for help
  • You can understand what other people want you to do (or not do)
  • You can understand why people want you to do things
  • You can let people know you have something to tell them
  • You can know when someone understands or is interested in what you are saying.

Social Interaction

Social interaction is very closely linked to communication. It is the way people talk and act with each other and various structures in society. Some autistic people can find social interaction stressful if they do not know the rules for a particular situation. If you do not know the rules, it can make it difficult to know how and when to join in, you can appear too familiar, or on the other hand too formal, and you can go too far without realising. An autistic person who struggles with social interaction may not pay attention to others, may appear aloof, distant and uninterested, may lack some social skills, and may not understand relationships. This can mean those autistic people:

  • Are anxious about contact with other people
  • May not be motivated to communicate
  • May not learn from, and about, other people
  • May not see any reason to please others (so may not do what they are asked)
  • May cause offence without being aware
  • May find it difficult to make friends
  • May not know how to react to other people’s feelings
  • May appear insensitive or egocentric.
  • May be vulnerable to bullying, abuse and people taking advantage of them.

Socialising can be exhausting for a person with autism. Ensuring that the person is able to take regular breaks from socialising can go a long way to helping them to feel welcome and understood in social situations.

Supporting a person with autism in their social interactions

Social stories™ are useful tools to explain what to do and what not to do in specific situations. Comic strip conversations can help a person to understand what others think of what the person has done and what the autistic person can do instead. Role-play can help a person to learn how to respond in specific situations, and practice in a safe environment. Peer mentoring can allow an autistic person to learn about social interaction from a sympathetic and understanding peer. The methods you use should be tailored to the needs and abilities of the person you are supporting.

Rigidity or flexibility of thought

In autistic people, the rigidity of thought is characterised by not knowing what might happen if a plan doesn’t happen and needing structure and routine to stay calm. In some cases, this need can lead to rigid behaviours, routines and rituals. Free time can be very difficult for autistic people as they may be unsure of what to do in this unplanned time. Some autistic people have excellent attention to detail, but may not be able to see the bigger picture or being able to cope with change or when things change. They may also have difficulty putting things into context.

There are four things an autistic person needs to know:

  • What am I doing now?
  • How long will I be doing it for?
  • What will I be doing next?
  • When will I be doing something I really enjoy?

Supporting a person with rigid thinking

Structure, timetables and knowing about change in advance can be excellent tools to help autistic people predict what will happen next. Flowcharts can be helpful to support a person to understand the consequences of their actions or decide which action to take depending on the situation.

Special Interests

Many autistic people have a special interest. In contrast to obsessions, special interests bring intense pleasure to the autistic person. They are more than simply hobbies, they are what the autistic person thinks about most of the time. These special interests provide predictability and motivation.

Anything can be a special interest for an autistic person, ranging from football teams and television programs to pieces of string and 50 pence pieces or celebrities or famous people. The intensity of the interest is the key point that differentiates it from neurotypical interests. Some autistic people can name every actor who has played Dr Who, the years they appeared and what happened in each episode.

Autistic people may have more than one special interest, and some people have a range of different interests over their lifetimes.

There have been instances where an autistic person has got in trouble with the law due to their special interest. For example, Gary McKinnon’s interest in UFOs led him to hack into a US military computer network. If you are concerned that the special interests of the person you are supporting could get them into trouble, it is important for you to discuss this with them and put in place tools to help them to know what they can and cannot do.

Making the most of a autistic person’s special interests

Give the person you support plenty of time to spend on their special interest, as it is a source of happiness for them. Incorporate their special interests into other activities to motivate them. Do not use the withdrawal of special interest as a punishment.

Sensory Issues

Autistic people can be over-or under-sensitive to any of their senses including Touch, Sound, Sight, Taste, Smell, Balance (vestibular) and awareness of where your body is in space (proprioception).

An autistic person can have a number of different sensory issues and can over-sensitive to one sense and under-sensitive to another. Sensory issues can have a huge impact on all other aspects of a person’s life. When a person is stressed, the sensory issues can become much worse.


What is Autism Spectrum Disorder?

Autism spectrum disorders (ASDs) represent a range of brain disorders that are characterized by restricted patterns of behaviour and impairments in social communication and interactions. These disorders share common origins and features but are classified as spectrum disorders because symptoms and severity vary among individuals. Autism spectrum disorders are also to me like an umbrella if you imagine it with different colours or some will likely to see it as a palette that an artist use while they paint different pictures. So, therefore that will go with us on the spectrum that we will have different colours to show us what we are and who we are. We all have our different strengths and weaknesses, talents and more like anyone else. After all, we are still human and that we are just different people with diagnoses. We shouldn’t let autism define us.


What is Aspergers Syndrome?

Asperger’s Syndrome is the second most common ASD and is a milder form of autism. Children with Asperger’s Syndrome exhibit higher language development than children with autism and often have normal intellectual ability combined with a disinterest in social communication. Children with Asperger’s may not initiate or sustain a conversation and do not compensate for their limited language by using nonverbal means of communication, thus limiting their peer relationships. Similar to autism, children with Asperger’s do not share enjoyment or interests with others.


How are ASDs Treated?

There is no one treatment for ASDs; however, it is widely accepted that the earliest interventions allow the best outcomes.  Treatments generally address both cognitive and behavioural functioning. They may include a combination of medications (for challenging behaviours), behavioural therapy, psycho-education, family support groups, educational interventions, speech and language therapy, occupational therapy and specialized training to develop and improve the acquisition of necessary skills.  

Research has found that a newer class of atypical antipsychotic medications may better treat the serious behavioural disturbances in children with autism who are between 5 and 17 years old. Applied behavioural analysis may be an effective adjunctive treatment in reinforcing desirable and reducing undesirable behaviours. Other work focuses on improving social communication in children with autism. Some have found that structured multidisciplinary behavioural programs are more successful. Parental involvement, a predictable schedule, regular behaviour reinforcement, and active engagement of attention in highly structured activities to enhance strength or ability may all contribute to creating an effective treatment program.


HOW IS A DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD) DIFFERENT FROM OTHER DIAGNOSES?

Because we do not know the causes, ASD diagnoses are based purely on observations or reports of behaviours. Unlike many medical syndromes, ASD is not a disease. It is not contagious and is not yet treatable through medication (though medicine can help some symptoms). It is a developmental disorder that reflects differences in the way that children develop from very early on (from infancy and toddlerhood) and that usually continue to affect development into adulthood. The primary treatments are educational (e.g., teaching individuals with ASD ways to do things that may not come as easily for them) and compensatory (e.g., helping individuals learn to use their strengths to make up for areas that are more difficult), as well as behavioural (e.g., helping individuals and families to minimize behaviours that interfere with daily living, such as tantrums or self-injury).


HOW IS AUTISM SPECTRUM DISORDER DEFINED?

ASD is defined by difficulty in two areas of behaviours: 1) social communication and 2) repetition and insistence on sameness. Exactly how an individual is impacted across these areas varies greatly. There is no one behaviour that is present in all individuals with ASD or that would rule out ASD in every person. Many, but not all, individuals with ASD have language delays. Some individuals with ASD, but not all, have lifelong language disorders. Some, but not all, individuals with ASD also have intellectual disability that affects the development of nonverbal problem-solving, everyday self-care (e.g., dressing; academics) and language.



ARE THERE DIFFERENT TYPES OF ASD? ARE SOME CASES OF ASD MORE SEVERE THAN OTHERS?

In DSM-5 [the newest edition of the psychiatric diagnosis manual], there are no subtypes within Autism Spectrum Disorder (ASD), which is now considered a single condition. Rather, within ASD, there are dimensions (social communication and repetitive/restricted behaviours) that can be considered separately in terms of severity. Specifiers allow the description of biological conditions (such as Fragile X, other genetic patterns, epilepsy, Rett Syndrome) and modifiers (such as intellectual disabilities, unusual late regression) that affect the behaviour and development of individuals with ASD.

The former subtypes of DSM IV Pervasive Developmental Disorders, including PDD-NOS and Asperger Disorder, are subsumed within ASD. Individuals who have existing diagnoses of Asperger Disorder do not need re-evaluations but should be assumed to meet DSM-5 ASD criteria.

The goal of having the single diagnostic category is to encourage clinicians to represent a child’s or adult’s strengths (such as strong cognitive skills) and other difficulties (such as an additional language disorder) in a more transparent fashion and also to be clear that ASD is a behavioural diagnosis that can occur in association with a number of genetic conditions (so that a child can have both ASD and a genetic condition).


WHAT ASD DIAGNOSES WERE GIVEN TO PEOPLE BEFORE AMERICAN PSYCHIATRISTS UPDATED THEIR DIAGNOSTIC MANUAL IN 2013?

Within the category of Autism Spectrum Disorder (sometimes known as Pervasive Developmental Disorders or PDD), there were a number of subtypes that were associated with different levels of severity in different areas.

Autism was the disorder that had received the most study and had been recognized for the longest time. It was defined by the presence of difficulties in each of the three areas listed above (social deficits, communication problems and repetitive or restricted behaviours), with onset in at least one area by age 3 years. It may or may not be associated with language delays or intellectual disability.

Asperger Syndrome was a form of ASD that was often identified later (e.g., after age 3, usually after age 5) and was associated with the social symptoms of autism and some repetitive interests or behaviours, but not with language delay or intellectual disability. Many parents and professionals used this term with older and/or more verbally fluent individuals with autism because they feel it was less stigmatizing.

Rett Syndrome and Child Disintegrative Disorder are both very rare, severe forms of ASD that have particular patterns of onset, and, in the case of Rett Syndrome, a specific genetic basis.

Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) was a form of ASD used to describe individuals who met the criteria for autism in terms of social difficulties but not in both communication and restricted, repetitive behaviours. It could also be used for children who did not have clearly defined difficulties under age 3 or later. This term was often used by professionals when they were not quite sure of a diagnosis or when the symptoms were mild. Several epidemiological studies have reported that as many or more children had PDD-NOS or less clear symptoms as had classic autism. The difficulties of children and adults with Asperger Syndrome or PDD-NOS were similar, and milder than those of individuals with autism, suggesting that these distinctions were fairly arbitrary and should not be used to limit services or benefits.


What Benefit is a Diagnosis of ASD?

A diagnosis should go beyond a description of defining features of a disorder to provide important information about other aspects of behaviour or development. For example, where ASD is concerned, it is essential to know that families with one child with ASD are at greater risk for having another child with ASD, though this risk is probably less than 1 in 5. Also important is the fact that adolescents with ASD are more likely to have a seizure or develop epilepsy than other children their age. Most important of all, a diagnosis often provides children access to services through school systems and early intervention networks. It can also provide adults access to services through vocational programs. A diagnosis can give parents and family members a way to start acquiring information about other children with similar difficulties and ways to find support through local, national and international organizations.

A diagnosis should provide information about effective and ineffective treatments. Though there are no one-size-fits-all treatments for ASD, it is clear that low-intensity interventions that are not built on engaging a child in social interaction and communication, and that do not involve parents, are not appropriate programs for young children with ASD. In ASD, many children’s behaviour problems (e.g., tantrums) are linked to not being able to communicate. Providing the child with a way to let others know what he or she wants (e.g., through words or signs or pictures) and helping the child understand what others are saying (also through pictures or objects or gestures) can decrease problem behaviours greatly. Medications may help treat additional symptoms in ASD, such as hyperactivity, but are often less effective in children with ASD than other children.

A diagnosis is necessary for doing research to find the causes and to improve treatments for ASD so that scientists can know who they are studying and can compare findings across different research projects. Because there are probably many subtypes of ASD, researchers need to work with large numbers of children and families in order to have adequate numbers of similar children. This means that researchers need to merge samples, which requires that they agree on common diagnostic procedures (or else they will not know what differences across samples mean if they occur).


WHAT ARE THE DIFFERENCES AMONG SCREENING, DIAGNOSIS AND A FULL ASSESSMENT OF ASD?

A screening involves determining if a child or adult is at risk for having an ASD and should have a more detailed assessment. This screening may be specific to autism or maybe part of more general screening for developmental disorders such as language delay. Screenings are intended to be brief, easy to use (by parents and professionals), and inexpensive. Positive screening should be followed up by a diagnostic assessment. The biggest difficulty in autism screenings to date is that, at least with young children, children later determined to have autism are often found to have been missed by earlier screenings. Thus, if parents are concerned, they should be wary of quick screenings and reassurances that everything will be all right without careful attention to their concerns.


WHAT MAKES A GOOD DIAGNOSTIC ASSESSMENT?

Because children and adults with ASD have such varying profiles, most good diagnostic assessments provide a description of strengths and weaknesses, including attention to children’s language, cognitive and other skills. These factors are often as important as the actual diagnosis of an ASD in setting appropriate goals and intervention plans. In the end, the most important factors in a diagnosis are the experience and care of the diagnostician. Many different healthcare professionals can diagnose autism including a child psychiatrist, clinical psychologist, developmental pediatrician, or a speech-language pathologist. In most cases, more than one discipline should be involved, if not at the same visit, at least in communicating their perspectives with each other.

A diagnostic assessment for ASD should involve both a history and a description of current behaviour by a caregiver, as well as direct observation of the behaviour of the child or adult suspected of having ASD by an experienced clinician. These observations require sufficient knowledge that having a less experienced person (e.g., a clinical assistant, a resident) do the assessment and then consult with the more experienced supervisor is generally not appropriate.

The most well-known diagnostic instruments for ASD are the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The ADI-R is a caregiver interview that takes about 2 hours; the ADOS is a series of play-based tasks administered to the child, usually with the parent(s) present. These instruments require training to administer and require more specialist hours than most health insurance is willing to reimburse. Many centres may use different combinations of these instruments and other, quicker measures (e.g., parent questionnaires) in a diagnostic assessment. What is important is not so much the specific instruments, as the combination of information from the caregivers and from an expert working with and observing the child. Also vital is the assessing clinician’s experience with ASD.

In almost all cases, interpreting diagnostic information also requires knowledge about the child’s receptive and expressive language and nonverbal functioning. A child who is very far behind in all areas (e.g., a 3-year-old who has the abilities of a 9 month-old) may score in the range of autism, not because he or she has ASD, but because there are so many things he or she cannot do, that scores will be high on any instrument. A very bright verbal 3-year-old with ASD will not have the same behaviours as a child with ASD with a severe language delay in comprehension and expressive language. Other pieces of information (e.g., ensuring the child can hear and that there are no contributing medical conditions, talking to the child’s current teachers if he or she is in preschool) are also important to a diagnosis of ASD. With increasing media awareness, many professionals who are not experts in ASD can recognize some symptoms of ASD and suggest possible diagnoses. Because of the variation in ASD, however, experts in these disorders often can provide information beyond a diagnostic term that can help parents in making decisions about treatments.


HOW YOUNG CAN A CHILD BE TO RECEIVE A DIAGNOSIS OF ASD?

Some children have such clear symptoms that they can be reliably diagnosed with ASD at 12 – 15 months, but most clinicians will want to wait until a child is 18 – 24 months before giving a diagnosis. Diagnoses made under age 3 are less reliable (e.g., less predictive of stable diagnoses over time) than diagnoses made in older children, so it is important for children who receive diagnoses when they are very young to be re-evaluated each year, including measurement of changes in cognitive and language skills. In later years, re-evaluations usually focus more on how behaviours and skills have changed more than on diagnosis.


WHAT IS THE RELATIONSHIP BETWEEN GETTING A DIAGNOSIS AND GETTING SERVICES?

Legally, in the United States, a child is supposed to receive educational and early childhood services according to his or her needs, not according to a diagnosis, but many states and school systems do differentially allocate services to children with autism diagnoses. Some states do not provide the same services to children with a diagnosis of PDD-NOS or Asperger Syndrome as they do to children with a diagnosis of autism. This is not scientifically or educationally justifiable, but it means that families may feel pressed to get a clear diagnosis of autism in order for their child to receive the services he or she needs, even though they, and professionals, may prefer the more ambiguous classifications (e.g., PDD-NOS, Asperger) because they imply milder symptoms. While sometimes service providers may treat autism (and scores on autism diagnostic instruments) as all or none, this is not correct. This is one reason to be sure that a child’s evaluation is done by someone experienced and knowledgeable about ASD.


ARE THERE WAYS TO GET THE MOST OUT OF A DIAGNOSTIC ASSESSMENT FOR ASD?

The more prepared parents are for a diagnostic assessment, the more they will usually get out of it. If at all possible, both parents should attend the assessment so that both can see what was done and be able to ask questions. If this is not possible, having a relative or friend come along can be very helpful, too. Preparing a list of questions to ask the clinician both before the assessment and after can be very helpful. Making copies of these lists to give to the clinicians may help the clinician remember to address what is most important to the caregiver. Taking a list of people who already work with the child, their phone numbers, and good times to reach them can also save tracking information down later. In addition, making/taking copies of any previous assessments and reports is a very good idea. Even if the parents want an independent assessment, being able to tell the examiner what tests their child has already had can save time and money.

Whether it is the child’s pediatrician or a local autism society or a friend, asking the person making the referral for the assessment to describe what to expect and how to prepare can be useful. Taking snacks and small toys that a child likes is often helpful. (Sometimes, rather than giving them to the child right away, it is best to ask the clinician if he or she would like to use them.) If the child can understand, rehearsing with him or her where they are going, who they will see, and what they may do (e.g., play with toys), is usually a good idea as well. With a young child, a parent or parents should almost always be present during the evaluation, unless the child is so distracted by the parent’s presence that the examiner cannot get a fair assessment. Reviewing the child’s baby book and talking to other people who knew the child when he or she was younger can also be helpful in refreshing a parent’s memory in order to provide a more accurate history.


Autism is a different ability not a disability”
“Autism is a different operating system.”
“Autism is not a tragedy, ignorance is”

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