4

Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)

You may know someone who’s like this: looks really normal, but when speaking, sometimes, she doesn’t fully understand language, sometimes, she talks like a child or professor or philosopher. She has complete limbs but seem not to do tasks well. At far she stands good, but when near her, she has poor gait. She rather be alone than socialize, seems so shy. She is maybe very beautiful, but cannot groom herself, and has no experience in romance. You may suspect she has autism, but hey, she talks. Maybe she has ADHD, but not really. She has dyspraxia, but not clumsy enough. What does she have? These symptoms are part of the “atypical autism,” better known as pervasive developmental disorder-not otherwise specified (PDD-NOS).

What is PDD-NOS?

PDD-NOS is a sub-type of autism spectrum disorder (ASD) marked with autism symptoms but not fully to be diagnosed with typical autism. Generally, PDD-NOS is under the umbrella ASD or pervasive developmental disorders (PDD) where it is a group of conditions that involve delays in the development of many basic skills. Most notable among them are the ability to socialize with others, to communicate, and to use imagination (triad of impairments). Children with these conditions often are confused in their thinking and generally have problems understanding the world around them.[1]

PDD-NOS is a ‘subthreshold’ condition in which some – but not all – features of autism or another explicitly identified Pervasive Developmental Disorder are identified.[2] It is also referred to as “atypical personality development,” “atypical PDD,” or “atypical autism.”[2]

Like all forms of autism, PDD-NOS can occur in conjunction with a wide spectrum of intellectual ability. Its defining features are significant challenges in social and language development.[3]

Image courtesy of Dr. Joshi’s Center for Autism. PDD-NOS is under the ASDs which is under the broader PDDs.

PDD-NOS is removed from the current DSM-5 and is replaced by the general autism spectrum disorder by severity. But in ICD-10, PDD-NOS is still accepted

What causes PDD-NOS?

Like in other ASDs, PDD-NOS has no definitive cause, but PDD-NOS can run in families. The underlying basis of PDD is neurological and most probably genetic. They affect more boys than girls and are usually evident by age three years, although in the case of PDD-NOS the signs may not be noticed until slightly later.[4]

What are the symptoms of PDD-NOS?

PDD-NOS symptoms are the following[5]:

  • Do not respond to their name by 12 months of age.
  • Do not point at objects to show interest (point at an airplane flying over) by 14 months.
  • Do not play “pretend” games (pretend to “feed” a doll) by 18 months.
  • Avoid eye contact and want to be alone.
  • Have trouble understanding other people’s feelings or talking about their own feelings.
  • Have delayed speech and language skills.
  • Repeat words or phrases over and over (echolalia).
  • Give unrelated answers to questions.
  • Get upset by minor changes.
  • Have obsessive interests.
  • Flap their hands, rock their body, or spin in circles.
  • Have unusual reactions to the way things sound, smell, taste, look, or feel.

Generally, PDD-NOS symptoms are[6]:

  • Communication difficulties (e.g., using and understanding language)
  • Difficulty with social behavior
  • Difficulty with changes in routines or environments
  • Uneven skill development (strengths in some areas and delays in others)
  • Unusual play with toys and other objects
  • Repetitive body movements or behavior patterns

Studies suggest that persons with PDD-NOS belong to one of three very different subgroups[6][7]:

  • A high-functioning group (around 25 percent) whose symptoms largely overlap with that of Asperger syndrome, but who differ in terms of having a lag in language development and/or mild cognitive impairment.[7] (The criteria for Asperger syndrome excludes a speech delay or a cognitive impairment.[8])
  • A group (around 25 percent) whose symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms.[7]
  • The biggest group (around 50 percent) consists of those who meet all the diagnostic criteria for autistic disorder, but whose stereotypical and repetitive behaviors are noticeably mild.[7]

How is PDD-NOS diagnosed?

To diagnose PDD-NOS, a child must have a certain number of characteristics relating to social and communication skills, and also show some repetitive behaviour. When a child has only some of these characteristics, the child might be diagnosed with pervasive developmental disorder – not otherwise specified (PDD–NOS).[9]

PDD-NOS is typically diagnosed by psychologists and Pediatric Neurologists. No singular specific test can be administered to determine whether or not a youngster is on the spectrum. Diagnosis is made through observations, questionnaires, and tests. A mother or father will usually initiate the quest into the diagnosis with questions for their youngster’s doctor about their youngster’s development after noticing abnormalities. From there, doctors will ask questions to gauge the youngster’s development in comparison to age-appropriate milestones. One test that measures this is the Modified Checklist of Autism in Toddlers (MCHAT). This is a list of questions whose answers will determine whether or not the youngster should be referred to a specialist such as a Developmental pediatrician, a neurologist, a psychiatrist, or a psychologist.[10]

Although PDD-NOS is milder than the typical autism (autistic disorder), much difficulty in navigating the world is apparent when compared to a neurotypical (NT). The sad part is, PDD-NOS is harder to diagnose than autistic disorder because people with PDD-NOS can talk and usually have average to high intelligence (though can also exist in low intelligence), can be assimilated into school and/or work, and can live independently. The problem with PDD-NOS is that the child or adult with PDD-NOS is “labeled” as Different. Clearly. “Weird.”[11] They are also prone to be loners as well because of their inappropriate social behavior.

Image courtesy of asiam.ie. People with PDD-NOS are usually described as loners.

To better understand PDD-NOS symptoms, let’s quote from My Asperger’s Child about PDD-NOS[10]:

Because PDD-NOS is a spectrum disorder, not every youngster shows the same signs. The two main characteristics of the disorder are difficulties with social interaction skills and communication. Signs are often visible in babies, but a diagnosis is usually not made until around age 4. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.

Once a youngster with PDD-NOS enters school, he will often be very eager to interact with classmates, but may act socially different than peers and be unable to make genuine connections. As they age, the closest connection they make is typically with their mom and dad. Kids with PDD-NOS have difficulty reading facial expressions and relating to feelings of others. They do not know how to respond when someone is laughing or crying. Literal thinking is also characteristic of PDD-NOS. They are unable to understand figurative speech and sarcasm.

Inhibited communication skills are a sign of PDD-NOS that begins immediately after birth. As an infant, they will not babble, and as they age, they do not speak when age appropriate. Once verbal communication begins, their vocabulary is often limited. Some characteristics of language-based patterns are: repetitive or rigid language, narrow interests, uneven language development, and poor nonverbal communication. A very common characteristic of PDD-NOS is severe difficulty grasping the difference between pronouns, particularly between “you” and “me” when conversing. Difficulty with this would look something like this:

Parent: “Do you want to color this or do you want me to?”

Child: “Me.”

This “me” response would be because, since the mother or father spoke the word “me”, the youngster thinks that “me” still applies to the parent. The youngster with autism cannot grasp – without intervention – that the pronoun assignment of “me” refers to the speaker, and not to whomever spoke it first.

The former DSM-IV diagnostic criteria of PDD-NOS go like this[12]:

I. Qualitative impairment in reciprocal social interactions:
This refers to a developmental difference in the individual’s interest and competence in achieving reciprocal interactions.  It does not mean that the individual is not affectionate, or cannot make contact with other people, or is simply behind schedule in the development of social skills. What is different is the quality of interaction and interest.

Behaviors suggesting this area may be affected include:

  • difficulty understanding/perceiving the emotions of others 
  • difficulty sustaining interactions initiated by others
  • poor, fleeting or abnormal eye contact
  • lack of comfort-seeking when distressed
  • difficulty making peer friendships appropriate to developmental level
  • lack of social or emotional reciprocity
  • lack of effort to share interests or enjoyment with others (may not show, point out or bring objects to share with others)
  • in preschool children, lack of turn-taking play with peers (although the child may enjoy active and rough-and-tumble play)
  • difficulty understanding social cues
  • difficulty understanding and expressing his/her own emotions
  • seeking touch and affection on own terms, but shunning affection when offered by others (not on own terms)
  • preference for solitary play instead of group or paired play
  • absence of symbolic play behavior, very literal and concrete in comprehension (e.g., would not use a block as a telephone)
  • frequent or sustained giggling, laughing or crying without visible cause
  • may appear deaf at times, yet hear sounds from a distance at other times (ignore voice when name is called, yet run to window when ice cream truck is two blocks away)


II. Qualitative impairment in verbal and non-verbal communication and imaginative activities:
Again, this does not refer to a delay in development, but rather a difference in the way verbal and nonverbal communication proceeds.  Behaviors suggesting this area may be affected include:

  • normal development of early babbling and first words which are later lost between the ages of 1 and 3 years, while other development appears to proceed on course
  • difficulty developing verbal communication
  • pulling adults to items of interest rather than pointing or gesturing
  • lack of use of gestures, demonstration, mime to compensate for lack of verbal expression
  • repeating phrases verbatim frequently (echolalia)
  • repeating phrases (often from TV) out of context after a period of time has passed (delayed echolalia)
  • using words out of communicative context (walks around saying “hi daddy” when daddy is at work, and nobody is present)
  • answering question by parroting question back to you
  • poor timing and content variation in topic
  • difficulty taking turns in maintaining a conversation
  • difficulty with abstract concepts (learns nouns better than verbs or adjectives)
  • difficulty understanding the “theme” of a story
  • inventing own words for objects and rigidly uses them (neologism)
  • talking mainly about one restricted topic, or using one word repeatedly (perseveration)
  • acting as if adults can read his/her mind
  • question-like or sing-song cadence to their speech
  • difficulties in imitation


III. Restricted repetitive and stereotyped patterns of behavior, interests, and activities:

  • engaging in repetitive non-functional body movements (for example, spinning or whirling
  • around, flapping arms or hands, rocking, walking on tiptoes, looking at fingers (stereotypies)
  • difficulty with changes or transitions
  • under- or over-sensitivity to sensory stimuli (sounds, lights, textures, odors)
  • restricted food preferences, sometimes related to food texture
  • may explore environment in unusual ways (smelling objects, mouthing excessively, scratching, licking)
  • develop attachments to objects that are not typical for children (must sleep with twigs) 
  • may carry around objects without ever playing with them, and become upset when they are taken away 
  • becomes fascinated with parts of objects (wheels, lines, writing)
  • may spin objects that are round in shape
  • may focus on ordering and reordering or categorizing toys instead of playing with them (lining up cars, amassing red blocks)
  • plays with materials in the same sequence across a period of time where variation would be expected (has Ernie follow same route to hospital every time he plays with car mat)
  • develops routines that are difficult to break
  • may get upset over trivial changes in environment (moving a lamp)
  • not interested in a wide variety of toys and materials
  • peculiar insistence in selected items, sequences, or routines (will only drink milk out of a certain cup)
  • does not ask for help, but figures out how to get what he/she wants


OTHER CONCERNS:

  • eating inedible objects
  • undersensitive to pain
  • attention span fleeting for most activities, yet can spend long periods of time focused on one activity of his/her own interest (can watch videos for hours, but can’t sit for 30 seconds for other tasks)
  • high overall activity level
  • may need less sleep than typical children of the same age
  • absence of fear or appreciation of dangerous situations
  • self-injurious behavior that does not appear to be directed at achieving any result (head banging, eye poking, biting)
  • uneven intellectual ability (skills show a great deal of variability)
  • peculiar fascination with one specific medium (country music, TV station, Wheel of Fortune, preview guide), etc.
  • more interested in credits and commercials than TV shows
  • unusual fear reactions


STRENGTHS:

  • good memory, especially for visually presented information
  • enjoys completing tasks with a set end point
  • may have precocious interest in letters and numbers
  • cuddly and affectionate with parents, usually on own terms
  • mechanical aptitude (can program the VCR at age 2)
  • higher skills/talents in art, music, math, balance
  • enjoy vestibular stimulation (tosses, being turned upside down, etc)
  • stamina
  • good non-verbal problem solving abilities (can get what they want)

What happens if PDD-NOS is not diagnosed?

PDD-NOS is more than just a combination of language disorders, motor disorders, and social difficulties. This is an autism spectrum disorder with atypical or uneven development: can talk but cannot comprehend language, can move limbs but cannot play sports or dance, can make acquaintances but cannot form close friends and romantic relationships, can go to school and learn but cannot work and be employed long-term, and this makes one of the most difficult neurodiverse conditions to be identified, making people with PDD-NOS very prone to social isolation, unemployment, homelessness, depression, anxiety, OCDs, various mental disorders, and suicide. That’s why the earlier the identification and intervention for PDD-NOS, the better the outcome.

How is PDD-NOS managed?

PDD-NOS has no cure. To achieve the best possible progress children identified with PDD–NOS need focused support and intervention early on. And, the intervention programme must be tailored to suit the child’s specific needs.[13]

Interventions include[13]:

  • Special Education – this is the concept of tailoring or adapting day to day education to specifically meet a child’s unique learning needs. This may include modified curriculum and modified reporting systems. It is obligatory in most developed countries.
  • Establish an Individualised Educational Plan (IEP) or a Negotiated Educational Plan (NEP) – this is a plan formulated by school staff, specialists and parent input. This plan lays the groundwork for necessary therapies and academic training. IEP’s and NEP’s can be developed as funded or unfunded options.
  • Behavior Modification – the development of positive strategies to support the behaviour of the child to improve their learning and functioning (Applied Behavior Analysis makes use of reinforcements so that the child learns to respond in a particular manner. It rewards positive behaviours and ignores the undesirable ones. The desired outcomes are broken down into attainable, success-based tasks. This teaches the child how to learn so that they can then move on to academic work)
  • Teaching and learning – quite often, these children simply require a little more time to learn and respond. Their learning is always buoyed by additional visual input. Never underestimate the positive impact on learning when a student and teacher (and parents) have the best of relationship.
  • Develop visual aids; schedules, planners and timetables – these children often resist change to their routines. It is important to provide them with a plan so they know what activities are first, next, and last. If they are unable to read, then use picture cues on the schedule. These kids are reliant on advanced notice of imminent changes.
  • Speech Therapy – this specialisedadditional work is often needed to correct specific letter and word pronunciations. When necessary, language skills are addressed to help the child learn how to respond appropriately to certain phrases and questions. This type of therapy is often administered on an individualised basis, by a speech therapist. It is very appropriate for therapy to occur during the course of the school day.
  • Occupational Therapy – offers designs to increase the child’s day to day and classroom functional abilities (sensory integration therapy). Sensory problems often cause children to be overly sensitive to textures, noises, smells and sounds. If the child has problems with fine motor skills that hinder writing and other class tasks, therapy can be used to address these problems as well. Again, it is very appropriate for therapy to occur during the course of the school day.
  • Medication – considered to treat specific secondary symptoms such as anxiety, depression, hyperactivity and highly aggressive or reactive behaviours
  • Social Skills Training – where children are explicitly taught pro-social behaviours; how to interact with their peers in specific situations[13]
  • Complementary Therapies – martial arts, gymnastics and music therapy, assist children flex their muscles, literally and figuratively, as they learn how to function in a group setting away from school[13]

Some of the more common therapies and services include:[6]

Image courtesy of Therapy, Learning & Communication – WA. The earlier the intervention for PDD-NOS, the better the outcome.

Adults with PDD-NOS? What to do?

If an adult suspects he might have PDD-NOS, usually a referral to a psychiatrist is first made. This is usually because he has experienced struggles with the so-called “triad of impairments” – socialization, communication, and language (as opposed to speech) and is already suffering from depression or other mood disorder. Although adult diagnosis of PDD-NOS is difficult at first, still he must describe his symptoms suspected to be identifiable with PDD-NOS (cannot hold a regular job, longtime involuntary celibacy, depression, etc). Once a diagnosis is made, therapies to manage PDD-NOS for children are also applied to adults, as well as support groups are also included in management for PDD-NOS.

Adults with PDD are able to function at varying degrees depending on the severity of the disorder. Many adults with milder forms of PDD are able to work and live on their own or with some help. Still, difficulties communicating and relating to people can cause problems in many areas of life. People with PDD can benefit from skills training, support, and therapy into adulthood.[14]

Regardless, people with PDD-NOS are still people after all. ll they need is acceptance and support for them to live satisfying lives.

Reference:

  1. http://www.webmd.com/brain/autism/development-disorder
  2. http://childstudycenter.yale.edu/autism/information/pddnos.aspx
  3. https://www.autismspeaks.org/what-autism/pdd-nos
  4. http://www.autism.org.uk/About-autism/Related-conditions/Pervasive-developmental-disorder/PDD-NOS-whats-in-a-name.aspx
  5. http://www.brainbalancecenters.com/who-we-can-help/pdd-nos/
  6. https://en.wikipedia.org/wiki/Pervasive_developmental_disorder_not_otherwise_specified
  7. Walker DR, Thompson A, Zwaigenbaum L, Goldberg J, Bryson SE, Mahoney WJ, Strawbridge CP, Szatmari P 2004. Specifying PDD-NOS: a comparison of PDD-NOS, Asperger syndrome, and autism. J Am Acad Child Adolesc Psychiatry. 2004 Feb;43(2):172-80. PMID 14726723 [1] and [2].
  8. American Psychiatric Association (2000).“Diagnostic criteria for 299.80 Asperger’s Disorder (AD)”. Diagnostic and Statistical Manual of Mental Disorders (4th, text revision (DSM-IV-TR) ed.).ISBN 0-89042-025-4. Retrieved 2007-06-28.
  9. http://raisingchildren.net.au/articles/pervasive_developmental_disorder.html
  10. http://www.myaspergerschild.com/2011/08/pervasive-developmental-disordernot.html
  11. http://pddworld.blogspot.com/2013/01/a-pdd-nos-diagnosis-sucks.html
  12. http://www.psychiatry.emory.edu/PROGRAMS/autism/pdd.html
  13. http://www.whatsthebuzz.net.au/whats-the-buzz/pervasive-development-disorder-not-otherwise-specified-pdd-nos
  14. http://www.womenshealth.gov/illnesses-disabilities/types-illnesses-disabilities/pervasive-developmental-disorders.html

Further Reading:

  1. http://www.bbbautism.com/diagnostics_psychobabble.htm
  2. http://edition.cnn.com/2013/04/02/health/iyw-growing-up-autistic/
  3. http://www.foxnews.com/health/2013/04/11/lost-in-crowd-growing-up-with-pervasive-developmental-disorder/
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Autism-Related Disorders and the DSM-5 Change

Autism Spectrum Disorder is a general umbrella term for a neurodevelopmental condition with deficits in social interaction and communication, stereotyped or repetitive behaviors and interests, sensory issues, and in some cases, cognitive delays.[1] IT is called an “umbrella” because it encompasses some of the neurodevelopmental disorders with the same symptoms in a continuum. They are as follows (from severe to mild):

  • Rett’s Syndrome
  • Autistic Disorder
  • Childhood Disintegrative Disorder
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
  • Atypical Autism
  • Asperger’s Syndrome

The “common” autism that most of us know is the Autistic disorder, where the child who has it has all the classic symptoms of autism and is non-verbal. But there are also “milder” versions or milder disorders similar to the autistic disorder like Asperger’s syndrome and a genetic disorder similar also to autism like Rett’s syndrome (for my general article in autism, click here). However, due to the overlapping symptoms and misuse of these disorders led the American Psychiatric Association revised their Diagnostic and Statistical Manual of Mental Disorders (DSM) and remove these autism-related disorders and instead absorbed them into the umbrella term “autism spectrum disorder.”[2] However, the World Health Organization’s disease manual, International Classification of Diseases (ICD), did not remove these disorders, but placed them under the general category of “Pervasive Developmental Disorders.”[3]

DSM-IV (the fourth edition) has this list of autism and its related disorders[4]:

The following is the ICD-10’s equivalent of autism spectrum disorders[3]:
F84 Pervasive developmental disorders
  • F84.0 Childhood autism
  • F84.1 Atypical autism
    • .10 Atypicality in age of onset
    • .11 Atypicality in symptomatology
    • .12 Atypicality in both age of onset and symptomatology
  • F84.2 Rett’s syndrome
  • F84.3 Other childhood disintegrative disorder

F84.4 Overactive disorder associated with mental retardation and stereotyped movements

  • F84.5 Asperger’s syndrome
  • F84.8 Other pervasive developmental disorders
  • F84.9 Pervasive developmental disorder, unspecified

Whereas, the DSM-5 has now its criteria for autism spectrum disorders, according to severity[5]:

Autism Spectrum Disorder           299.00 (F84.0)

Diagnostic Criteria

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

Table 2  Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3
“Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2
“Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and how has markedly odd nonverbal communication.
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1
“Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence

Hmmm… But what’s the implication of removing milder forms of autism in the DSM-5?

The separate diagnoses of autistic disorder, PDD-NOS, and Asperger syndrome is no longer applicable. Meaning, only the autism spectrum disorder (ASD) is applied regardless of severity. ASD is the new single diagnosis of all forms of autism. The DSM also removed Rett’s syndrome because it is a genetic/chromosomal disorder and is similar to other chromosomal disorders like fragile X syndrome, tuberous sclerosis, or Down syndrome[6] and it has a known molecular etiology.[6][7] However, there will be a conflict when the DSM is compared to the ICD, where Rett’s syndrome is still under pervasive developmental disorders, and Asperger’s syndrome is not yet removed. Overlapping diagnoses of ASD or PDD will be still common.

Another problem that DSM-5 changes may bring is the acceptance among people with milder forms of autism. Since disorders like Asperger’s and PDD-NOS are eliminated, they are now confused with autistic disorder; some people even protested against the DSM’s changes. Patients and parents alike became anxious about these change. This anxiety ranges from a mild concern on the part of some parents to angry protest: More than 8,000 people signed an online petition circulated by the Global and Regional Asperger’s Syndrome Partnership; another petition sponsored by Asperger’s Association of New England received 5,400 signatures.[8]

But why is the DSM-5 has changed criteria for diagnosing ASD (if it causes confusion and anxiety to the autism community)?

Experts from APA have this explanation about DSM-5 changes in a Slate magazine article:

The logic behind the changes seems sound. “There wasn’t any evidence after 17 years that [the DSM-IV diagnoses] reflected reality,” says Bryan King, director of Seattle Children’s Autism Center, who served on the APA task force charged with revamping the diagnosis. “There was no consistency in the way Asperger’s or PDD-NOS was applied.” In fact, a 2011 study by Catherine Lord (another member of the task force) and more than 35 colleagues reported, “In these 12 university-based sites, with research clinicians selected for their expertise in ASD and trained in using standardized instruments, there was great variation in how best-estimate clinical diagnoses within the autism spectrum (i.e., autistic disorder, PDD-NOS, Asperger’s disorder) were assigned to individual children.”[8]

This argument sounds right, but some experts don’t agree because milder forms of autism has more subtle symptoms than the autistic disorder, and most countries don’t even recognize milder autism forms because people with these conditions can be verbal and independent (but still with social and communication deficits).

Another quote from Slate[8]:

Certain states provide services for children diagnosed with autism but not for those diagnosed with Asperger’s. “It was difficult to get kids with Asperger’s services because their deficits can be subtle, so they were left on their own to some degree,” says Matthew Siegel, director of the Developmental Disorders Program at Spring Harbor Hospital in Maine. And it’s not just those with Asperger’s who have been shortchanged by the current system, says Stewart Newman, who treats kids from all parts of the spectrum at Mind Matters PC in Oregon. He has spent many hours advocating for his patients with educators who had “a lack of clarity about what the diagnosis of PDD-NOS in particular meant, and how the children should be characterized for special services.”

Parents of children with autistic disorder are now worried about integrating higher functioning children with the low functioning ones; hence, blurring of the distinction of the severe and milder form of autism spectrum disorders.

Parents of lower-functioning kids are also concerned about how the influx of high-functioning individuals will affect the public’s perception of autism—mainly because they feel autism is a serious disorder that people should associate with profound disability. One mother commented online that “the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe autism have.” Ursitti, who has a daughter with Asperger’s and a son with severe autism, feels this is already happening: “If we have this national perspective that autism is a blessing, that it’s not a crisis, the ones who will lose out are the expensive ones, the severe ones. Legislators focus on the cheapest option, and celebration is cheaper than treatment.”[8]

That parent’s comment is right, this change may lessen the severity of autism symptoms and may forget the classic autism and will only recognize milder forms of autism.

Not good. But somehow, the DSM has its autism spectrum severity scale from 1 (mild) to 3 (severe).

What is my opinion about the DSM-5 change?

I really do not know my standing about the changes in the DSM-5. But I find the ICD-10 more accurate than the DSM-5. I wish APA never eliminated autism-related disorders and integrated them into the umbrella of ASD, though I slightly agree with their elimination of Rett’s syndrome because it is chromosomal, but it has still autism-like symptoms. But with the removal of autism-related disorders, laymen will never know milder forms of autism (particularly in my native Philippines) and also the public will never know the internal struggles of people with milder autism and other pervasive developmental disorders and may only trivialize people with autism as either mutes or eccentric geeks, without seeing

Reference:

  1. https://en.wikipedia.org/wiki/Autism_spectrum
  2. http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf
  3. http://www.who.int/classifications/icd/en/GRNBOOK.pdf?ua=1
  4. https://en.wikipedia.org/wiki/DSM-IV_codes
  5. https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria
  6. https://en.wikipedia.org/wiki/Rett_syndrome
  7. Abbeduto, Leonard; Ozonoff, Susan; Thurman, Angela John; McDuffie, Angela; Schweitzer, Julie. Hales, Robert; Yudofsky, Stuart; Robert, Laura Weiss, eds. Chapter 8. Neurodevelopmental Disorders, The American Psychiatric Publishing Textbook of Psychiatry (6 ed.). Arlington, VA: American Psychiatric Publishing. ISBN 978-1-58562-444-7. Retrieved 11 March 2015.
  8. http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/autism_spectrum_diagnoses_the_dsm_5_eliminates_asperger_s_and_pdd_nos.html

Further Reading:

  1. http://raisingchildren.net.au/articles/dsm-5_changes_to_autism_diagnosis.html
5

Indifferently Different – The World of Autism

Humans are social animals. We love companionship with our fellow species. We interact with other people through communication, empathy, and social skills (things you do to form social relationships like greeting, chit chat, dating, etc). But not all can understand human interaction. Some people cannot socialize and empathize like most of us do. They also find it hard to communicate, even if they have the ability to speak. These symptoms are part of the lifelong condition called autism.

What is autism?

Autism is a condition under the umbrella of autism spectrum disorders (ASD), that affects social interaction, communication, interests and behaviour.[1] The main features of autism are social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome or high-functioning autism, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).[2] This means that persons with autism find it hard to relate to other people, have difficulty expressing themselves, and are preoccupied with what most people consider boring or monotonous like stacking up things in a linear fashion (like arranging toys into 1 line). Autism comes from the Greek word ‘autos,’ which means self, and the English suffix ‘-ism,’ which means condition.

How common is autism?

As of 2010 the rate of autism is estimated at about 1–2 per 1,000 people worldwide, and it occurs four to five times more often in boys than girls.[3] Research indicates that more and more children are diagnosed with autism than before. The number of reported cases of autism increased dramatically in the 1990s and early 2000s. This increase is largely attributable to changes in diagnostic practices, referral patterns, availability of services, age at diagnosis, and public awareness.[3][4][5] This means people are becoming more aware of autism.

What causes autism?

There is no known cause of autism, but a lot of theories have been formulated. It is generally accepted that it is caused by abnormalities in brain structure or function.[6] Some risk factors for autism include high maternal age at the time of birth of the child, as well as maternal prenatal medication use, bleeding, or gestational diabetes. Other support of a biological theory of autism includes that several known neurological disorders are associated with autistic features like tuberous sclerosis and the fragile X syndrome (inherited disorder), cerebral dysgenesis (abnormal development of the brain), Rett syndrome (a mutation of a single gene), and some of the inborn errors of metabolism (biochemical defects).[7] A mutation in the CHD8 gene has also been linked as the cause of autism and can also cause gastrointestinal abnormalities[8][9]. They may also have epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. About 20 to 30 percent of children with an ASD develop epilepsy by the time they reach adulthood.[10]

What are the symptoms of autism?

image
Stacking up of objects is one of the features of autism.[11]

The main feature of autism is absence of social interaction. This starts as early as infancy. Autistic infants show less attention to social stimuli, smile and look at others less often, and respond less to their own name.[3] By toddlerhood, many children with autism have difficulty playing social games, don’t imitate the actions of others and prefer to play alone. They may fail to seek comfort or respond to parents’ displays of anger or affection in typical ways.[12] Despite lacking social interest, autistic children can be attached to their parents though in unusual ways.

Another feature is difficulty in communication. They also tend to be delayed in babbling and speaking and learning to use gestures. Some infants who later develop autism coo and babble during the first few months of life before losing these communicative behaviors. Others experience significant language delays and don’t begin to speak until much later.[12] Echolalia, or repeating what the other person says, is common in autism. As they grow up, they cannot understand nonverbal communication, figures of speech, and cannot comprehend perspective of another person, making it hard for an autistic person to form relationships.

Having repetitive behavior is also a sign of autism. Common repetitive behaviors include hand-flapping, rocking, jumping and twirling, arranging and rearranging objects, and repeating sounds, words, or phrases.[12] Also, it can take the form of intense preoccupations, or obsessions. These extreme interests can prove all the more unusual for their content.[12] Older children and adults with autism may develop tremendous interest in numbers, symbols, dates or science topics.[12] Routine is their best friend. They love to place all items in specific order. If that order or routine is disrupted, it may cause emotional outbursts and self-inflicting physical aggression to the autistic individual.

Because of these symptoms, autistics are difficult to understand and are often prejudiced. They become subjects of ridicule from neurotypical people, especially if they have no awareness of autism.

image

The diagram of autism symptoms.[12]

How is autism diagnosed?

Although the severity of symptoms vary, a health care provider can detect these signs to diagnose autism:[10]

Early signs[10]:
no babbling or pointing by age 1
no single words by 16 months or two-word phrases by age 2
no response to name
loss of language or social skills
poor eye contact
excessive lining up of toys or objects
no smiling or social responsiveness.

Later signs[10]:

impaired ability to make friends with peers
impaired ability to initiate or sustain a conversation with others
absence or impairment of imaginative and social play
stereotyped, repetitive, or unusual use of language
restricted patterns of interest that are abnormal in intensity or focus
preoccupation with certain objects or subjects
inflexible adherence to specific routines or rituals.

Does autism have a cure?

Autism has no cure. It is managed by therapies, special education, and medications. Therapies include speech therapy, applied behavioral therapy (ABA), occupational therapy, and family therapy for the autistic’s relatives.[10]

Individualized educational approach and tutoring are used for the autistic to suit his or her learning ability.

Medications are given for autism-related symptoms like anxiety, depression, ADHD, and obsessive-compulsive disorder(OCD). Antipsychotic drugs are given for severe behavioral problems. Anticonvulsants are given for seizure disorder or epilepsy.

What happens if autism is not managed?

The earlier the detection of autism, the better. If not addressed properly, there will be complications. Because of its features, autistics frequently face discrimination and bulling from the classroom to the workplace, which makes them feel isolated. They are prone to depression, anxiety, impulsive behavior, and mood swings.[13] They are also at high risk for unemployment and placement in a long-term care setting. For autistics with less severe symptoms, they can function as independent adults, though with difficulty including underemployment, divorce or unstable relationships, or may become domestic violence victims.

What about ‘autism spectrum disorders?’

As stated previously, autism falls under the range of disorders called autism spectrum disorders. The ‘common’ autism is the most severe form of autism. Also included is the pervasive developmental disorder not otherwise specified or low-functioning autism ( individuals with difficulties in the areas of social interaction, communication, and/or stereotyped behavior patterns or interests, but who do not meet the full DSM-IV criteria for autism or another PDD[14]), childhood disintegrative disorder (a rare condition characterized by late onset of developmental delays in language, social function, and motor skills[15], which starts to appear after a fairly normal development of a child), and Asperger Syndrome or high-functioning autism[16] (characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests with relative preservation of linguistic and cognitive development[17]). These milder forms of autism now fall under the autism spectrum continuum in the 2013 fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)[17].

Can someone with autism become successful?

Yes of course. Given management and support, an autistic, especially if he or she can be independent, can be successful in his or her area of interest or field. In fact, there are famous people with diagnosed or with suspected autism or other autism spectrum disorders[18]. Here they are:

Asperger syndrome[18]:

Syed Talha Ahsan, British poet and awaiting trial on terrorism-related allegations
Danny Beath, award-winning British landscape and wildlife photographer
Henry Bond, writer and photographer
Susan Boyle, British singer and Britain’s Got Talent finalist
Phillipa “Pip” Brown (aka Ladyhawke), indie rock musician
Michael Burry, US investment fund manager
Lizzy Clark, actress and campaigner
William Cottrell, student sentenced for fire-bombing SUV dealerships
Paddy Considine, actor
Johnny Dean, singer/songwriter of Britpop band Menswear
James Durbin, finalist on the tenth season of American Idol
Robert Durst, American real estate developer accused of murder
Tim Ellis, Australian magician and author
Brian A. Gutierrez, State of California Councilmember
Daryl Hannah, actress
Dan Harmon, screenwriter and creator of Community
Peter Howson, Scottish painter
Luke Jackson, author
Heather Kuzmich, fashion model and reality show contestant on America’s Next Top Model
Adrian Lamo, American computer hacker
Adam Lanza, Sandy Hook Elementary Massacre shooter
Clay Marzo, American professional surfer
Gary McKinnon, computer hacker who broke into high-security military and government sites
Travis Meeks, lead singer, guitarist and song writer for acoustic rock band Days of the New
Les Murray, Australian poet
Robert Napper, British murderer
Ari Ne’eman, American autism rights activist
Jerry Newport, American author and mathematical savant, basis of the film Mozart and the Whale
Craig Nicholls, frontman of the Australian alternative rock band, The Vines
Gary Numan, Musician
Tim Page, Pulitzer Prize-winning critic and author
Dawn Prince-Hughes, Ph.D., primate anthropologist, ethologist, and author
Nicky Reilly, failed suicide bomber from Britain
John Elder Robison, author of Look Me in the Eye
Vernon L. Smith, Nobel Laureate in economics
Raymond Thompson, New Zealand scriptwriter and TV producer
Penelope Trunk, American businesswoman, writer, and blogger
Aleksander Vinter, Norwegian musician who produces under the alias Savant
Liane Holliday Willey, author
Alan Wilson, Musician, Primary Composer, Singer, Guitarist, and Leader of the Blues-Rock band Canned Heat
Vladimir Putin, Russian President

High-functioning autism[18]:
High-functioning autism is an informal term, not an official diagnostic category. Compared to diagnostic criteria for the official ASDs, descriptions of HFA tend to align most closely with Asperger syndrome.

Michelle Dawson, autism researcher and autism rights activist
Temple Grandin, food animal handling systems designer and author
Courtney Love, frontwoman of the rock band Hole
Caiseal Mór author, musician, and artist
Hikari Ōe, Japanese composer
Dylan Scott Pierce, wildlife illustrator
Jim Sinclair, autism rights activist
Donna Williams, Australian author
Satoshi Tajiri, game designer, creator of the Pokémon series.
Frankie MacDonald, Canadian Internet Amateur Weatherman

Autism spectrum[18]:

Jessica-Jane Applegate, Paralympic swimmer
Amelia Baggs, advocate of rights for autistic people
Jacob Barnett, physics student
Lucy Blackman, university educated author
Luca Brecel, Belgian professional snooker player.
Martin Bryant, Australian Port Arthur Mass Shooter
Tony DeBlois, blind American musician
John Hall, Ed. D., American author of Am I Still Autistic and chief executive of Greenwood Hall
Todd Hodgetts, Paralympic shot putter
James Hobley, British dancer and 2011 Britain’s Got Talent finalist
Jonathan Jayne, contestant on American Idol
Bhumi Jensen, grandson of Bhumibol Adulyadej, King of Thailand
Christopher Knowles, American poet
Leslie Lemke, blind American musician
Jonathan Lerman, American artist
Jason McElwain, high school basketball player
Thristan Mendoza, Filipino marimba prodigy
Tito Mukhopadhyay, author, poet, and philosopher
Freddie Odom, U.S. Mayor, actor, and teacher.
Derek Paravicini, blind British musician
James Henry Pullen, gifted British carpenter
Matt Savage, U.S. jazz prodigy
Birger Sellin, German author
Henriett Seth F., Hungarian autistic savant, poet, writer and artist
Daniel Tammet, British autistic savant
50 Tyson, rapper and autism activist
Richard Wawro, Scottish artist
Stephen Wiltshire, British architectural artist
Alexis Wineman – Miss Montana 2012

Say, autistics are not only nerds. They can be also rock stars, politicians, and beauty queens.(^-^)

Even relatives of public figures have autism:

Joshua Aquino, nephew of Philippine president Benigno S. Aquino III

Historical Figures[19]:
Note: Although autism was coined only in the 1900s, many famous people of the past do have autism or autism spectrum disorders.

Albert Einstein
Wolfgang Amadeus Mozart
Sir Isaac Newton
Charles Darwin
Thomas Jefferson
Michaelangelo
Hans Christian Andersen
Andy Warholl
Emily Dickinson

So if you make fun of your colleague who is autistic, you better watch out because, who knows, maybe one day, he or she will become more successful than you.

image

Well, well, well, famous folks are autistic.[20]

Advocacy:

Interestingly, more and more people, autistics and neurotypicals alike embrace and celebrate their condition autism. Some even plead not to ‘cure’ autistics, but understand them and appreciate their talents instead. This is called ‘neurodiversity’ where instead of making autism a debilitating condition, it makes autism one variation of human brain diversity that specializes in systematized thinking. For more information, see my article Wired Differently.

Bonus: Autism Brain

image

Image courtesy of BBC News[21]

Researches show that children with autism have different brain development from normal children. In one research done at University of California, San Diego, researchers believe that excessive brain growth does not allow enough time for a child to properly process the experiences and emotions that guide and shape normal behaviour.[21] It means that autistic babies’ brains grow bigger at a faster rate than non-autistic babies’ brains.

Now, let’s compare the adult autistic brain to a neurotypical brain:

image

Functional magnetic resonance imaging (fMRI ) scan of a neurotypical brain vs autistic brain.[22]

In this MRI scan, the autistic brain is bigger than the neurotypical brain. But researchers at Yale University have shown what happens in the brain as an autistic person considers a series of facial expressions. The brain area, called the fusiform face area, which lights up in an MRI of healthy people doing this task is not as active in autistic people.[22] Hmmm… more intelligent maybe. I think that too large brain size cannot accommodate too much information, eh?

image

Autistics can think differently from the rest.[23]

Final note: Autism can be a disability to most people, but think again. Maybe it’s not really bad to be different at all.

Autism is one of the conditions that fall under the neurodiversity group. Next time, more conditions will be featured.

References:
1. http://www.nhs.uk/conditions/autistic-spectrum-disorder/Pages/Introduction.aspx
2. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
3. http://en.m.wikipedia.org/wiki/Autism
4. Fombonne E (2009). “Epidemiology of pervasive developmental disorders”. Pediatr Res 65 (6): 591–8. doi:10.1203/PDR.0b013e31819e7203. PMID 1921888
5. Wing L, Potter D (2002). “The epidemiology of autistic spectrum disorders: is the prevalence rising?”. Ment Retard Dev Disabil Res Rev 8 (3): 151–61. doi:10.1002/mrdd.10029. PMID 12216059
6. http://www.autism-society.org/what-is/causes/
7. http://www.medicinenet.com/script/main/mobileart.asp?articlekey=80415&page=8
8. http://en.m.wikipedia.org/wiki/CHD8
9. Bernier, Raphael (2014). “Disruptive CHD8 Mutations Define a Subtype of Autism Early in Development”. Cell 158 (2): 263–276. doi:10.1016/j.cell.2014.06.017
10. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
11. http://www.stuartduncan.name/wp-content/uploads/2014/11/Autism.jpg
12. http://www.autismspeaks.org/what-autism/symptoms
13. http://www.healthline.com/health/autism-complications#Complications2
14. http://en.m.wikipedia.org/wiki/PDD-NOS
15. http://en.m.wikipedia.org/wiki/Childhood_disintegrative_disorder
16. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit/how-are-and-hfa-dif
17. http://en.m.wikipedia.org/wiki/Asperger_syndrome
18. http://en.m.wikipedia.org/wiki/List_of_people_with_autism_spectrum_disorders
19. http://autismmythbusters.com/general-public/famous-autistic-people/
20. http://autismbattle.com/wp-content/uploads/2014/02/autism-famous-1.jpg
21. http://news.bbc.co.uk/2/hi/health/3067149.stm
22. http://whyfiles.org/209autism/4.html
23. http://epilepsyu.com/wp-content/uploads/2014/10/Shun-the-myths.

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