Pervasive Development Disorders A fact sheet produced by the Mental Health Information Service Pervasive Development Disorder (PDD) or Autistic Spectrum Disorder (ASD) are umbrella terms that refer to a group of conditions that typically begin in early childhood and continue throughout life. They are associated with an assortment of behaviours, difficulties and differences. One person s Pervasive Development Disorder is not the same as another s. They all vary in symptom combination and the degree of severity to which they impair the persons thinking, feeling, language, and ability to relate to others. According to the DSM-IV (the psychiatrists diagnostic manual), the term Pervasive Development Disorders includes: Autistic Disorder (Autism) Asperger s Disorder Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) Childhood Disintegrative Disorder Rett s Disorder Asperger s and PDD-NOS are often referred to as autism-spectrum disorders. Although they can be similar, management will differ, and it may be inaccurate to treat them as autism. On occasions professionals will have varied opinions on which label should be given, and it is not uncommon for an individual s diagnosis to change over time. Childhood Disintegrative Disorder and Retts Disorder are extremely rare, and although they resemble the others they are distinctive in symptoms and onset. Nevertheless some people still think these disorders are the same as autism. According to the National Institute of Mental Health (U.S. Department of Health and Human Services), autism spectrum disorders are more common in children than betterknown disorders like diabetes, spina bifida and Down s syndrome. Prevalence studies estimate about 2 to 6 children in every 1000 have some form of Pervasive Development Disorder. Due to misinformed media representation and lack of knowledge on the subject, the general community seems to have developed a misguided impression about what constitutes a Pervasive Development Disorder. Pediatricians, family physicians, daycare providers, teachers, and parents may initially dismiss signs of Autism Spectrum Disorders, optimistically thinking the child is just a little slow and will "catch up." Although early intervention has a dramatic impact on reducing 1
symptoms and increasing a child's ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten. (US National Institute of Mental Health) There are many programs and interventions that aid in the management of Pervasive Development Disorders. Early diagnosis is critical for the prognosis of a child s future. If a parent or carer is concerned about any aspect of a child s development, it is advisable to seek information from varied sources and advice from people knowledgeable in the field of childhood disorders; and thoroughly investigate the available options for professional help when necessary. If you are not happy with the findings seek another opinion. The longer a child goes on with an incorrect diagnosis or undiagnosed, the more chances of reversing detrimental consequences will decrease. It is also useful to educate yourself about childhood disorders, and seek information and help from support groups. Pervasive Development Disorders all vary as to when they might first become evident. Milder variations of these disorders can go undiagnosed and cause unidentified difficulties for a person throughout their life. At times a child may seem different from birth - or there may be no indication of a problem until the child has begun school, or beyond. Sometimes symptoms can appear in children who had previously been developing typically. Intellectual disability is frequently associated with Pervasive Development Disorders, however in some cases people have an average or above average IQ. The presence of intellectual disability is at times considered an influential factor used to determine the diagnosis of autism as opposed to Asperger s. Broadly, symptoms may include: Impaired communication Impaired comprehension Slow at reaching childhood milestones Lack of interest in people or objects Focusing absorbedly for lengthy periods Flat facial expression and vocal tone Repetition of heard phrases and words Difficulties maintaining eye contact Difficulties initiating and sustaining conversation Very specific and unusual preoccupations and attachments Extreme preference for routines Causes At this point in time there is no proven cause for any of the pervasive development disorders, though recently a mutated gene located in the X chromosome has been associated with Rett s syndrome. According to the National Institute of Mental Health evidence points to genetic factors playing a prominent role in the causes of Autistic Spectrum Disorders. Twin and family studies have suggested an underlying genetic vulnerability to ASD. The possibility of individual susceptibility to environmental factors, contributing to a person acquiring a PDD has been mentioned in other references. There 2
is a controversial suggestion that the MMR (measles, mumps, rubella) vaccine has resulted in the development of characteristics resembling autism in some children. Treatment There are many methods available for the treatment and management of Pervasive Development Disorders. A holistic approach is often suggested, and has proven to be most effective. Treatment depends on the individual, the disorder, the severity and available resources. Ultimately decisions concerning treatment rest with the parents, carers or in some cases the individual, concerned. There are many unproven methods available. Parents will recommend treatments that have worked for their children, but as all cases are different potential treatments need to be carefully scrutinised. Each case is individual and all interventions should be researched, investigated and considered in terms of the person and their disorder. Recognised treatments include occupational therapy, physiotherapy, speech therapy and specialised education methods. Medication is sometimes used to assist with behavioural problems and cognitive functioning of individuals with PDDs. Pervasive Development Disorders can be coupled with mental and emotional problems such as impulse-control disorders, obsessive-compulsive disorder, mood and anxiety disorders and phobias. Intellectual disability and genetic disorders such as Fragile X can also be associated. These problems can be severe, and several can occur together. They may start early in life, making them more complicated to treat, especially when the controversial possibility of medicating young children is suggested. Depending on the origin and severity of these problems, appropriate treatment will vary. Anxiety can sometimes be managed by providing a controlled environment, clear communication and structure. Depression is common, especially in adolescence, and may be difficult to recognise when the person has problems naming emotions and expressing their feelings. Medication, behavioural therapy, relaxation training, education and counselling may all be useful. With suitable treatment and education, many people with PDDs can show excellent responses. Autism Autism is a baffling developmental disability that typically appears in the first three years of life. It is a neurological disorder that affects the functioning of the brain and is recognised by delays in the development of young children. A person with autism typically experiences difficulties with communication, and often oblivious to the meaning and purpose of body language. They can also find it very difficult to comprehend the traditional spoken and written word. They may find standard social interaction to be complicated, bewildering and frightening. In some cases there may be the presence of repetitive, stereotyped and restricted interests and behaviours. Aggressive and/or selfinjurious behaviour may be present in some individuals. Some people with autism show a typical range of intelligence and develop good language skills. Others may be intellectually delayed and develop little or no language. A very small number of people with autism are gifted with special skills or exceptional talents, like photographic memories, amazing mathematical ability or brilliant artistic or musical skills. These people are said to have Savant Syndrome in conjunction with their autism. Many 3
brilliant people throughout history are now believed to have had autism or displayed some autistic tendencies. Children with autism are usually noticed as being delayed in reaching milestones including speech, toilet training and socialising with their peers. An early diagnosis has been proven valuable in teaching children with autism and their families, strategies and techniques that enable them to fit into mainstream schools, and go on to lead happy and fulfilling lives. Contrary to popular belief, people with autism cannot usually be identified by their appearance. Due to the hidden nature of their problems, it can be much harder to generate awareness of, and consideration for their behavior. Many people with autism show affection, smile and laugh, make eye contact, and show a variety of other emotions in different ways. The same way other children do, they will experience mood changes and respond to their environment in positive and negative ways. The autism will influence their different responses, and affect the way their body and mind react in varying circumstances. When undiagnosed, the symptoms can cause anxiety, frustration and confusion, which may cause or increase the presence of unusual behavioral problems associated with autism. Autism is believed to be about four times more prevalent in boys than girls and appears in all races. Family income, way of life and education do not affect the chance of a person developing autism. Bad parenting or emotional deprivation does not cause autism. People with autism can appear as highly functioning or low-functioning and have many variants in-between. Many symptoms and problems combine to establish a diagnosis of autism. Some examples of these follow: Impairment in the use of multiple non-verbal behaviors such as eye-to-eye gaze, facial expression, body postures and gestures, to regulate social interaction Failure to develop peer relationships appropriate to developmental level Lack of spontaneously seeking to share enjoyment, interest or achievements with other people (eg, not showing, bringing or pointing out objects of interest) Delay in, or total lack of, the development of spoken language In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others Stereotyped and repetitive use of language or idiosyncratic language Preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal, either in intensity or focus Apparently inflexible adherence to specific non-functional routines or rituals Stereotyped and repetitive motor mannerisms (eg, hand or finger flapping or twisting, or complex whole-body movements) Relentless fixation with parts of objects Asperger s Disorder Asperger s Disorder is often considered to be a less severe form of autism, however both disorders can vary in symptoms and severity. Asperger s is diagnosed when some autistic symptoms are present with average or above average IQ and there are no 4
significant delays in acquiring the spoken language. Other problems regarding language, communication and relationships may be evident. Asperger s Disorder (also called Asperger s Syndrome) can have corresponding symptoms to autism including impairment in social interaction, and displaying restrictive repetitive and stereotyped patterns of behavior, interest and activities. The noted difference is that there is no impediment in acquiring language e.g. single words are used by age 2 and understandable sentences used by age 3. Unlike autism, children with Asperger s generally show no significant delay in cognitive development and usually develop age-appropriate self-help skills. They frequently have problems with social interaction but can manage to adapt to their circumstances and show an interest in their environment. Children with Asperger s generally display an average to high IQ and often speak in a regimental manner. They often become obsessed with one or few interest and insist on educating others about their findings. They may be inclined to associate with adults or significantly older or younger children. Pervasive Development Disorder-Not Otherwise Specified PDD-NOS, or Atypical Autism, is a general term for conditions that are close to, but don't quite fit, the set of conditions for autism or other specific conditions within the autism spectrum. This label is sometimes given initially before it can be determined which PDD is responsible for the problems being experienced. It can sometimes cause confusion when referred to as PDD for short as Pervasive Development Disorder is a category not a condition in itself. Rett s Disorder Rett s disorder has been identified as being caused by a mutated gene located in the X chromosome, and is almost exclusively found in girls. After a normal prenatal period the child is born with an average head circumference and their psychomotor development appears typical for at least the first 6 months. Sometime between the age of 5 and 48 months there is a noted reduction in the speed of head growth and between 5 and 30 months the child loses acquired hand movements and develops unusual hand movements resembling hand washing or hand wringing. The child seems uninterested in their environment; however this is often only temporary. These children may have poor coordination and display severe psychomotor retardation. They are impaired in the use of meaningful language. Childhood Disintegrative Disorder Childhood disintegrative disorder is a very rare disorder that is diagnosed when a child regresses after a period of typical development. The child develops age-appropriate adaptive behavior with play and social relations. There is evidence of verbal and nonverbal communications from about age two and may continue up to or before age 10. The child will then lose previously learned skills in areas of language, bladder or bowel control, motor skill or social skills. This disorder seems to affect more males than females. The extended time of standard development before regression helps to distinguish CDD from Retts syndrome. 5
Similar Conditions There are a number of conditions, which can cause children to exhibit some of the symptoms seen in PDD s. A through investigation is necessary to rule out other disorders or identify coexisting problems, such as deafness, ADHD, Tourette s Syndrome, Obsessive-compulsive disorder, Fragile-X Syndrome and Schizophrenia to name a few. Some forms of brain injury have also been known to cause people to display some symptoms seen in autism. Sources Autism: An introduction for parents and carers (National Autistic Society) (viewed 22 Dec 2004) http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=121anda=2192 Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 1995 National institute of Mental Health. American Psychiatric Association. (Viewed 12 Jan 2005) http://www.nimh.nih.gov/publicat/autism.cfm#intro National Institute of Neurological Disorders and Stroke (NINDS) (viewed 1 Oct 2004) http://www.ninds.nih.gov/disorders/autism/detail_autism.htm National Dissemination Center for Children with Disabilities. Autism and Pervasive Developmental Disorders (Viewed 10 November 2004) http://www.nichcy.org/pubs/factshe/fs1txt.htm#top What is Autism? (Autism Association of NSW) (Viewed 12 Nov 2004) http://www.autismnsw.com.au More Information For more information contact The Autism Association of NSW http://www.autismnsw.com.au/ PO Box 361, Forestville NSW 2087 PH-02 8977 8300 Autism Information Line 02 8977 8377 or your local GP or the Mental Health Information Service 1300 794 991 for fact sheets and services in your area. Suggested Reading Howlin, Patricia. 1997. Autism preparing for adulthood published by Routledge USA and Canada. Powers, Michael D. PSY.D with Poland, Janet, 2002 Asperger Syndrome and Your Child. A Parent s Guide. Unlocking Your Child s Potential. HaperCollins Publishers Inc. NY Seroussi, Karyn. 2000. Unraveling The Mystery Of Autism And Pervasive Development Disorders: A Mother s story of Research & Recovery. Simon & Schuster, Inc. Stanton, Mike. 2000 Learning to Live with High Functioning Autism A Parent s Guide for Professionals, Jessica Kingsley Publishers Ltd, London 6
Useful Websites Autism Resources (viewed 12 Jan 2005) http://www.autism-resources.com/ Center for the Study of Autism (viewed 12 Jan 2005) http://www.autismwebsite.com/ National Institute of Neurological Disorders and Stroke (NINDS) (viewed 18 Jan 2005) http://www.ninds.nih.gov/disorders/autism/detail_autism.htm "Ooops...Wrong Planet! Syndrome" (viewed 3 Jan 2005) http://www.isn.net/~jypsy/ Disclaimer The information provided is to be used for educational purposes only. It should not be used as a substitute for seeking professional care in the diagnosis and treatment of mental health disorders. Information may be reproduced with an acknowledgement to the Mental Health Association NSW. This, and other fact sheets are available for download from www.mentalhealth.asn.au. This fact sheet was last updated in April 2005 Mental Health Information Service Mental Health Association NSW Inc Level 5 80 William Street East Sydney NSW 2011 Phone: 1300 794 991 Fax: (02) 9339 6066 Email: info@mentalhealth.asn.au Web: www.mentalhealth.asn.au 7