Figures derived from a national survey on the experiences of parents with young adults on the Autism Spectrum conducted in Australia last year indicate that out of the 203 parents who responded to the survey only 44 reported having daughters diagnosed as being on the Autism Spectrum.
This stands in stark contrast to the 152 parents who reported having sons diagnosed on the Spectrum.
For this reason the information provided by parents with daughters on the Autism Spectrum is considered to offer a previously unexamined snap shot of the previously unrecognized parental experiences that are unique to parents of daughters on the Autism Spectrum.
Mothers of daughters within this survey reported that they had to struggle with professionals who were either unaware, ill-equipped or in some instances entirely unprepared to diagnose girls with High Functioning Autism/ Asperger’s Syndrome, Asperger’s Disorder.
As a result many mothers, such as a mother whose daughter wasn’t diagnosed with Asperger’s Disorder until the age of 44, reported having their children regularly misdiagnosed over the course of several years due to inappropriate professional biases towards them as mother’s and a clear lack of understanding as how Autism presents within girls.
The rates of diagnosis and age at diagnosis for girls with Asperger’s Disorder/ Asperger’s Syndrome or High Functioning Autism are further reflected in the statistical data.
|Year of Birth||Diagnosis||Age at Diagnosis|
|Mother||No Record||Asperger’s Disorder||26|
|No Record||Asperger’s Disorder||7|
|Mother||No Record||Asperger’s Disorder||7|
The youngest age at which girls identified as having an Asperger’s Disorder were reported being diagnosed within this survey was that of 7 years, at which only 3 girls, were identified.
2 girls were reported as receiving their diagnosis between the age of 9 and 10 years.
8 girls with Asperger’s Disorder were reported as receiving their diagnosis between the ages of 12 and 13 years.
11 girls were reported as receiving their diagnosis between the ages of 14 and 20 years.
7 females were recorded as receiving their diagnosis after the age of 21.
This indicates that the most likely age range for girls with an Asperger’s Disorder or Asperger’s Syndrome to be diagnosed is between that of 14 and 20 years.
The oldest reported age of diagnosis for a female with Asperger’s Disorder by a mother within this survey is recorded as being at 44 years.
Her mother reports that her daughter’s diagnosis process was “slow” and “frustrating” and states that:
“We eventually found a practitioner who knew about autism but it took decades to find someone.” In the meantime this mother reports being filled with: “FRUSTRATION and crying out for real help.”
This expressed sense of frustration is echoed time and time again by mothers with daughters on the spectrum and further indicates that there may well be several issues of gender at play within the realms of diagnosis.
Comments from mother’s within this survey indicate that not only does the gender of the child/young adult being assessed for an Autism Spectrum Disorder play a major role in the levels of diagnosis occurring but also the gender of the parent engaging within that diagnostic process.
This is further highlighted by the fact that although mothers of children within this study reported having an initial understanding that their children (both male and female) had different ways of responding to the world, often their attempts to understand those differences resulted in negative and personally harmful parental experiences with doctors.
Several mothers described having their concerns “invalidated” through having their parenting and psychological capacities questioned.
These are the words used by mother’s themselves to describe their experiences with the diagnostic process;
“I was actively invalidated in my concerns”.
“No one would listen and called me neurotic”.
“No help at any stage – considerable negativity + Put downs (of me)”.
Mother of daughter with Asperger’s not diagnosed until late teens.
“As a mother, I still carry all the emotional scars of the assault on my parenting.”
“Pediatrician refused to diagnose her as he felt she was not on the spectrum.”
“I knew she had something all along but I couldn’t get a doctor to help.”
Mother of a daughter with Asperger’s not diagnosed until 12.
“Professionals did not have training to recognise ASD in intelligent person”.
Mother of daughter with Asperger’s Disorder.
“Diagnosis from 7 years old was ADD inattentive, anxiety, transient tic, depression.”
Mother of daughter with Asperger’s not diagnosed until the age of 18.
“Took from age 2 to 11 years to receive diagnosis.”
“No one was prepared to help from when K was young (neurotic mother) “.
“5 years of medical mis-advise misdiagnosis, misunderstanding, full of angst.”
“Many incorrect diagnosis/parental blame/lack of support”.
“We had idea about ASD, diagnosed with ADD at 4 years.”
Mother of young adult not diagnosed until 22 yrs.
“Long process, complicated (by system/practitioners)”.
However, only one father within this study reported having any such experiences.
Mothers therefore describe having to engage with a lack of understanding and support that often began with their initial attempts to have their child’s needs recognised through a medical diagnosis.
Such parental experiences indicate that the tendency of medical professionals to ignore or misplace parental concerns, particularly the concerns of mothers, as reported by Phillip and Duckworth (1980) and explored in the works of Green (2005) and Ryan and Runswick-Cole (2007) are still occurring.
As Green (2005) and Ryan and Runswick-Cole (2007) argue, the medical mis-recognition of maternal concerns emphasises their precarious and powerless position which arises as a consequence of the unequal balance of power that is created through the elevation of medical opinion above the legitimate recognition of parental expertise.
Parents indicate that as a consequence of not having their concerns legitimately recognized or understood, their children’s needs were also negated. This is further reflected within the trends found within data derived from females on the autism spectrum.
Significance of female data
The significance of a lack of diagnosis occurring for girls with Asperger’s Disorder before the age of 7 and with the majority of diagnosis taking place between the ages of 14 -20 years for females, signals the possibility that medical professional may still yet remain either unwilling or unable to sufficiently detect the signs of Asperger’s Disorders / Asperger’s Syndrome in girls.
Maternal experiences of misdiagnosis, invalidation and their overall lack of recognition within the diagnostic process within this study suggests the need for medical practitioners to incorporate greater acceptance of parental insights. Regardless of gender.
As such the statistical findings relating to the lack of diagnosis for girls with Asperger’s Disorder prior to the age of 7 and the predominance of diagnosis between the ages of 14 – 20 years, supports the assertions voiced by both many adult women with AS (Simone, Lawson,) and parents within this survey, that there is a strong need for those within the medical profession to redress their gender bias within all areas of diagnosis in order to increase their diagnostic capabilities so that they can more accurately diagnose and assess the needs of females on the Autism Spectrum as a matter of urgency.
- Myths, Lies and Suspicious Minds – Debunking the popular misconceptions that surround the lives of adults with Asperger’s Syndrome (seventhvoice.wordpress.com)
- Sadly some people still believe that Autism is a male based condition and will always be so…… (seventhvoice.wordpress.com)
- Autism Awareness and Acceptance – This Autism Mothers Take on the never ending Autism Debate. (seventhvoice.wordpress.com)
- ” I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”. (seventhvoice.wordpress.com)