This invaluable guide was prepared by Clare Clayton as part of her Masters of Autism studies at Griffith University. It has been adapted and republished here with permission. The original guide can be found in PDF form at the bottom of the article.
The copyright of the work remains with Clare and may not be re-published in any form without her permission.
Pervasive Developmental Disorders
Pervasive Developmental Disorders (PDD’s) are a group of neurological disorders typically characterized by impairments in social, behavioural and communications skills.
Autism Spectrum Disorder (ASD) and Asperger’s Syndrome (AS) are two such PDD’s. Although described as separate conditions in the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) (1), their terms have been used interchangeably. This brochure will refer to both disorders as ASD.
Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) may be diagnosed if some, but not all of the full criteria of PDD’s are met.
What are the pervasive developmental disorders of ASD?
ASD is a spectrum disorder and defined as a “triad of impairments” in communication, social interaction and repetitive and stereotyped behaviours (2). It is currently believed that onset can be from in-utero development to early childhood development (3). Parents may notice that their child is not reaching developmental milestones or has regressed from milestones already reached. Other characteristics typical of ASD can be hyper - or hypo- sensitivities to sound, smell, taste or touch; auditory processing difficulties; difficulty with gross or fine motor skills; seemingly oppositional defiant behaviour; attention deficit or other educational difficulties (4).
Research from the Centre for Disease Control and Prevention (CDC) has stated that in 2010 ASD’s affect around 1 in 150, but recent research in 2012 has found this figure to be closer to 1 in 88. Males are 4 times more likely than females to be diagnosed with ASD and 10 times more likely with AS (5).
Are girls really less likely to have an ASD?
The honest answer is we’re not sure! But there is concern that girls may be missing being diagnosed or being misdiagnosed. There is currently no biological diagnosis for ASD’s, however there is some exciting research underway that may change this in future, in the hope that this will make accurate diagnosis more likely.
So why might girls be missed being diagnosed?
Current diagnosis is through a series of assessments made by a paediatrician or child psychiatrist with additional assessments made by a psychologist, speech pathologist or occupational therapist. Some of the information for these assessments is historical, so it is possible that information, dates and achievements of developmental milestones are not accurately recalled. It has also been suggested that due to the different ways boys and girls socialise and behave, that boys behavioural impairments are more pronounced (6).
So what are the differences between girls and boys with ASD’s?
ASD has been described as the “Extreme Male Brain” (7) so there are some factors which may be more easily identifiable in boys than girls. For example, in people without an ASD, females are naturally more empathic than males. Boys with an ASD therefore, would have very little to almost no empathy and would be easily identified when conducting a test to measure their empathic response. Girls with an ASD would likely have more empathy than boys with an ASD, and possibly more than non-ASD males so the empathic response may be difficult to use as a predictor when testing for an ASD in girls.
Girls also tend to play in groups whilst boys can be quite content playing individually. It has been suggested that girls with an ASD therefore get to learn much earlier on about social nuances and acceptable play than boys (6). For example, when under assessment girls may not meet the criteria of some of the social impairment questions than boys because they have already learned this behaviour from their peers rather than it being a natural development. Boys with an ASD may have more pronounced rigid or repetitive behaviours such as lining up toy cars, possibly in a strict order, rather than playing with them typically which could be seen as an unusual form of play. Girls however, may have that same strict order but, for example, it might be that all the toy pots and pans have to be in the bottom right cupboard of the play kitchen, or that their dolly has to wear specific clothes. The girls play seems to be more subtle than the boys when trying to identify rigid or repetitive behaviours.
Boys are naturally more aggressive than girls, thus boys with an ASD are also more likely to have more “melt-downs” on a grander scale than girls which can typically be one of the first reasons a parent may refer their son to their paediatrician.
What can I do as a parent to ensure I get a correct diagnosis?
- Ensure you keep up to date with your child’s developmental check-ups at the GP’s
- Document any concerns you may have, or other carers such as kindergarten teachers or school teachers may have about the development of your child.
- Consult your paediatrician with your concerns. If you do not have a paediatrician, then have one recommended to you; your GP, school, family or friends should be able to advise.
- If in doubt, seek a second opinion. Find a paediatrician that specialises in this area. Not all paediatricians are the same!
My daughter has been diagnosed with an ASD, what do I do now? Can she be cured?
- There is no cure for ASD’s, but there are therapies that can address some of the issues associated with ASD.
- Early Intervention support is essential for best outcomes. Your paediatrician or psychologist should be able to inform you of the support available in your area.
- You may be able to receive government funding to assist with early intervention support; ask your paediatrician etc. for details.
- You may find it helpful to join an ASD parents group for support. Check out what’s available in your area.
- There are many therapies available for children with an ASD, some better than others. There are agencies who have researched the effectiveness of these programs. Check out the NAC report for more information (8)
Can a child with an ASD go to kindergarten or school?
ASD is a spectrum disorder, meaning that its effects can be from extremely mild to most severe. Early intervention is a key step to assisting your child. Many children with an ASD attend school, but require an Individual Education Plan (IEP) to be in place to ensure that their full potential can be reached. It is important that an IEP is developed with input from the child, parents and other carers, teachers, psychologists, speech therapists and so forth. It is also important that IEP’s are reviewed regularly to ensure that the child is meeting their goals and amended as appropriate. Your child’s teacher will be an invaluable resource and will likely flag any other difficulties as they arise.
Children with an ASD can have many strengths and a good IEP will use these strengths to develop other skills (9).Transition between school years, junior to middle school, high school to university needs to be planned well. Talk to your child’s teacher and support officer about this transition.
What are some other areas of concern?
There is some current research looking into the relationship between ASD’s and anorexia. Current figures are that 1 in 5 cases of females with anorexia have autistic features. This research is examining if the brain becomes autistic because of the eating disorder, or if the females were undiagnosed as having an ASD. Researchers are looking at the difficulty in being able to shift the mindset of someone with anorexia, which is similar to the difficulties experienced by people with an ASD in being able to shift their mindset in general (10).
All children whether or not they have an ASD should be taught about healthy eating and a healthy attitude towards body image. Typically this tends to be from the onset of puberty where body image can become distorted but there is some research that suggests that the age of concern is getting younger. A proactive approach to healthy eating, exercise and body image for all children should be mirrored at home and at school.
Epileptic episodes have also been linked to girls with an ASD. Research has shown that a small percentage of girls with an ASD at the onset of puberty have had an epileptic fit. Talk to your paediatrician about any concerns you may have, especially if your child experienced seizures in infancy (11).
What other tests can be done to ensure an accurate diagnosis?
There are currently no biological tests to test for ASDs, however, there is some exciting research taking place in this area. Researchers are looking at brain development and the areas of the brain responsible for certain functions including communication, social behaviours, empathy, anxiety etc. Their findings are exciting not only for ASDs but for other neurological disorders too. It may be some time, however, before these methods can be used with confidence to indicate biological markers for an ASD.
Girls can typically be diagnosed with an ASD at puberty, why?
New social skills are developed in teenage years and girls with an ASD are more likely to stand out as a teenager as the learned behaviours during their childhood may no longer apply. The “hidden curriculum” or social nuances that we all understand can be alien concepts to a child with an ASD, which may have been masked in childhood due to the way girls socialise. Younger girls with an ASD have been said to have “social echolalia” where they can accurately mimic the typical social skills and behaviours including eye contact which makes diagnosis more difficult (6).
Changes in behaviour and friendship issues may become more prevalent. It is important if your daughter has been diagnosed with an ASD, whether as a teenager or a child, that they receive appropriate support at this stage of development.
(1) American Psychiatric Association. (2000). Desk Reference to the Diagnostic Criteria from DSM-IV-TR. Arlington, VA: American Psychiatric Association.
(2) Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 1, 11-29.
(3) Knickmeyer, R. C., & Baron-Cohen, S. (2006). Topical review: Fetal testosterone and sex differences in typical social development and in utism. Journal of Child Neurology, 21, 825-845. doi:10.1177/08830738060210101601
(4) Attwood, T. (2008). The Complete Guide to Asperger's Syndrome. London: Jessica Kingsley Publishers.
(5) Centre for Disease Control and Prevention. (2012, August 17). New data on autism spectrum disorders. Retrieved from Centre for Disease Control and Prevention: http://www.cdc.gov/Features/CountingAutism/
(6) Attwood, T., Bolick, T., Faherty, C., Grandin, T., Iland, L., McIlwee-Myers, J., .Snyder, R. (2006). Asperger's and girls. Arlington, TX: Future Horizons.
(7) Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive Sciences, 6(6), 246-254. doi:10.1016/S1364-6613(02)01904-6
(8) National Autism Centre. (2009). National Standards Report: The National standards project - addressing the need for evidence-based practice guidelines for autism spectrum disorders. Randolph, MA: National Autism Centre.
(9) Shore, S. M. (2004). Using the IEP to build skills in self-advocacy and disclosure. In S. M. Shore, Ask and tell: Self-advocacy and disclosure for people on the autism spectrum (pp. 65-142). Shawnee Mission: Autism Asperger Publishing Co.
(10) Treasure, J. (2007). Is anorexia the female Asperger's? London: The Times. Retrieved August 21, 201
(11) Morrell, M. 1. (1999). Epilepsy in women: the science of why it is special