Of central importance to this research was its focus on capturing the personal perspectives and stories of adults with AD and HFA, thus giving a unique ‘voice’ to a group whose needs have not been well understood or documented. These first-person data were complemented with information gathered from the parents of adults with AD and HFA, together with relevant service providers.
This report presents a comprehensive, though not exhaustive, overview of the findings of the We Belong survey of adults with Asperger’s Disorder and high functioning autism. Findings from the parent survey and service provider interviews are available in separate reports.
In its entirety, the We Belong study comprised three complementary arms of data collection:
Seventy-one per cent of respondents were male and 29 per cent were female.
The predominance of males in the sample is not unexpected, in view of the well-recognised gender imbalance in ASD diagnoses. However, it is notable that there is a higher proportion of females in the We Belong respondent group than might be expected in an average clinical population. The male–female diagnostic ratio for ASD is commonly considered to be around 4 to 1 (Whiteley et al., 2010), while the male–female ratio in this sample is approximately 2.3 to 1.
Whilst there is no immediately obvious explanation for the gender profile of the respondent group being shaped in this way, it may be considered a strength of the study that it has generated a strong subset of data pertaining to females with ASD, given the relative dearth of targeted research in this area (Gould & Ashton-Smith, 2011).
Respondents ranged in age from 18 to 70, with a median age of 30 years. Figure 2.1 presents a breakdown of the respondent group by specified age brackets; namely 18 to 25 and ascending decades thereafter.
Like females, older people have historically been under-represented in autism research, and especially in work that engages directly with the ASD population. For example, Stuart-Hamilton et al. (2009), in a review of international literature on adults with AD and HFA, identified just five qualitative studies that included individuals over the age of 30 as participants. The We Belong dataset significantly addresses this gap in current knowledge by providing in-depth insights into the lives of 122 adults with AD and HFA in the 30-plus age group.
21 per cent of adults in the We Belong study sample were married or in a de facto relationship contrasts noticeably with the 2011 Australian Census data, which showed almost half (49 per cent) of Australian adults to be in a registered or de facto marriage.
Eleven per cent of respondents indicated that they had at least one child aged 16 or under.
A further seven per cent of respondents ticked the alternative response box to indicate they agreed with the statement: “I believe I have an autism spectrum disorder, but I have not received a professional diagnosis”. Key characteristics of this small subset of respondents are explored briefly at the end of this chapter.
This research indicates a wide-spread in the ages at which respondents received an ASD diagnosis. Within the survey sample, the earliest reported diagnoses were received at age two and the latest at age 66. Just ten per cent of respondents were diagnosed during their pre-school years (up to the age of five), with close to half (45 per cent) diagnosed after the age of 18. The median age of diagnosis for all respondents was 23 years, with no difference between males and females.
As noted in the Introduction, there has been a substantial increase in diagnosis rates for ASD since the earliest prevalence studies were conducted in the 1960s (Williams et al., 2008). This trend is variously attributed to a heightening awareness of the disorder amongst parents and professionals; the gradual broadening of the diagnostic criteria; the now more frequent identification of children with mental retardation or language impairment as also having autism; and a growth in early-age diagnosis (Bishop et al., 2008; Bishop et al., 2010; Weintraub, 2011). This being the case, we might expect to see an overall pattern of the older adults in this study having been diagnosed with ASD later in life than their younger co-respondents.
Our findings confirm this anticipated relationship between chronological age and age of ASD diagnosis for the survey sample.
In descriptive terms, this indicates a general trend for adults aged 30 and over at the time of the survey (that is, born up to 31st December 1981) to have been diagnosed with ASD within the last ten years of their life to date. Out of a total of 122 respondents in the 30-plus age group, there were only five recorded instances of a diagnosis being obtained before age ten, and a further nine before age 20. For respondents aged under 30 (born from 1st January 1982 onwards) age of diagnosis was more varied, with around half of the 113 individuals in this group having received their diagnosis between two and ten years of age.
 Census data on marital status applies to individuals aged 15 and over. Data accessed 26 June 2012 from: http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/0?opendocument&navpos=220.
Now before you go there, please don’t be naïve enough to try and say that adults with Down Syndrome wouldn’t have the capacity to voice such concerns if they had them. Many with Down Syndrome have strong intellectual capacities and are out-spoken advocates in their own rights.
Yet still, I can honestly say that I have never once heard of such discontentment over parenting practices being voiced en mass within the Down Syndrome community.
So why is it I wonder, that such a constant stream of criticism over parenting practices forms such a major area of concern and contention within the Autism community?
Is it because they’ve genuinely suffered hatred and cruelty at the hands of their own parents?
Is it because they’ve lived childhood’s full of loneliness and neglect, or experienced undue parental punishments over misunderstandings such as not being able to look their parents in the eyes when speaking?
Or could it be, that proneness to being hypersensitive to negativity and critical instruction, which forms part of the characteristics of high functioning autism, is itself the reason why so many adults with Autism feel that their own parents let them down?
And if so, are they then applying their own personal experience as the template to make the further claim that parents of Autistic children need to change their parenting practices?
If that’s the case, I think one has to reasonably ask, given the subjectivities involved, whether or not such a template is the right one to apply?
After all, times have changed, you only have to look at the image above to know that parents are genuinely out there trying to improve their children’s lives, so I don’t think it’s necessarily accurate to paint today’s parents with the same criticisms that arose in the past.
What do you think?
The conversation mentioned in my last post on Autism: Emergence of the Denial of Difference has got me thinking, again. It seems to me that the diagnostic changes being offered up in the new DSM-V will only serve to further confuse understandings of autism. Not eliminate them. For instance, how are we to now explain that autism is a condition identified and defined by both the early onset of language and the lack of language development?
If the main diagnostic difference now being considered between High Functioning Autism and Low Functioning Autism is the development of early language…… then how do specialists explain Low Functioning Autism in children who developed early language ( a demarcation of high functioning autism), yet mysteriously lost their language before the age of 2? Or are we to no longer question how and why early language development disappears in some cases of Autism?
The sudden loss of language has continuously been an aspects of autism that has never been explained. So why do some children who have been developing ‘normally’ in every measurable, suddenly lose their language skills and become defined as “regressing” into Autism?
Why is it that along with this group of children who have been described as “regressing” into autism after developing ‘normally’, there are also an equally significant number of reports by parents of evidence that their children were “born with autism”?
Could it possibly be that there are two forms of autism emerging that have nothing what so ever to do with functionality? Could one form of autism be genetic (or from birth) while the other form is environmental (sudden loss of normal development)? If so this would indicate that neither the terms High Functioning or Low Functioning adequately define or describe the differences emerging for those who experience Autism.
Could the attempt to define and describe autism only in terms of functionality lead to the potential loss of understanding that the causation or the pathway approach may hold for those with autism and their families?
If we roll the potential that either a genetic or an environmental understanding of Autism creates into one singular continuum never again to be questioned, then how will we ever know what answers may have lain there?
Could this be an attempt to nullify the significance of the loss of early on set language within some children with autism?
It’s just a thought, but if there ever was a link established between autism and environmental factors, pharmaceutical companies may find themselves having to address some very awkward questions. It’s a well -known fact that the DSM has been historically constructed by specialists with a financial association with pharmaceutical companies. It is those now constructing the new DSM-V who are endeavouring to negate the previous definitional distinctions.
So perhaps we need to question just what is it about the prospect of acknowledging the potential for environmental factors to play a role in autism that has those within the DSM-V so hot and bothered?
Perhaps instead of trying to further push understandings of Autism into one holistic mess that neither answers or addresses the question of causation, we need to be going the other way and acknowledging that there are at least two significant differences being indicated in the formation of Autism within individuals.
Surely this new attempt by those constructing the DSM-V to acknowledge the similarities that occur within the Autism Spectrum shouldn’t necessarily mean the automatic denial of any differences. Apart from anything else it seems clear to me that there are more than just one singular set of linguistic differences between those with High Functioning Autism and those with Low Functioning Autism.
What do you think? Do you think that the early onset of language development is either the only, or the most important difference between high functioning and low functioning autism?
At a function today I was speaking with a psychologist who stated that for him, ‘the only diagnostic difference between High Functioning Autism, which encompasses Asperger’s Syndrome , and Low Functioning Autism, is the development of early language skills.’
He then followed up this initial statement by describing how ‘autism is such a difficult disorder to quantify because there are no core synchronicities between any ‘sufferer’s’ of the condition.’
‘Besides which’, he continued, ‘whether or not a child has a condition such as Asperger’s Syndrome (high functioning autism) is now irrelevant because the DSMV has amalgamated AS into the one understanding of the ‘Continuum of Autism.’
Now I have several concerns about this psychologist’s point of view, not the least of which is that this person has the capacity to diagnose children with autism based on such a loose, detached and theoretically as yet untested, description of autism.
I mean technically, when you think about it, we could just as easily apply this same flawed logic and say that all forms of cancer, despite their differences, should now fall under the one broad understanding of the ‘continuum of cancer’.
Yet we don’t do this and for good reason. For to do so would be to deny its multiple forms and therefore affect its clinical treatment.
Could you imagine the up-roar that would be created if a bunch of specialists got together and decided to write one overriding manual for the treatment of cancer which denied that there are different forms of cancer and instead asserted that there is only one form and it should be diagnosed as such?
Such an act would be akin to suggesting that we scrap all understandings of the different forms of cancer that occur by reverting back to a bye gone diagnostic process of defining cancer as a singular condition.
I think most people would agree that the act of defining a condition such as cancer in only one way would also effectively deny acknowledgement of the different forms of causation that lead to the condition. The understanding that there are different forms of cancer, due to different forms of causation, has been the single most significant element in creating effective treatments for multiple forms of cancer.
We wouldn’t seek to deny those differences for this very reason.
So why are specialists seeking to do this with autism?
(please note I am using the example of cancer as an analogy only and am in no way suggesting that either autism or cancer are the same thing).
Over a year ago I had the privilege of being part of a research team exploring the experiences of adults with High Functioning Autism/Asperger’s Syndrome, within our community. Whilst most of the data generated in the early stages of the research was considered comparatively raw, I never the less, picked up on some of the less anticipated and therefore more qualitatively unique themes that emerged from within the data.
One of those themes concerned the prospects of aging for those with High Functioning Autism.
I nominate this as a unique theme because it may very well represent the first time that any research project has stumbled upon the issue of aging as derived specifically from the perspectives of adults with high functioning autism themselves.
As an Autism parent I am well versed in the realm of potential fears that we hold for our children’s care as they enter into adulthood.
The ever-present concern of what ‘will happen in the future’ forms not only a salient question for parent carers, but is also, according to the words of many with High Functioning Autism, increasingly forming an even more salient and potentially frightening question for those with high functioning autism themselves.
‘What will happen to me when I can no longer remain independent within my own home?’
The level of concern that adults with high functioning autism express when discussing the issue of their own aging creates a disturbing picture of just what the reality of aged care may well represent for them.
A picture that from my perspective, demands that a clearer understanding of how adults with high functioning autism relate to the current structure of the aged care system and its facilities, be obtained and worked upon as a matter of policy.
For example, could an adult with high functioning autism, who has been independent prior to old age, cope with having to adapt to the routine of a nursing or aged care home?
Would they cope with being told not only when to eat but what to eat?
Would they deal well with a constant intrusion on their privacy by well-meaning staff?
Many of the adults spoken to described the current version of aged care on offer to them as a ‘nightmare’ of epic proportions.
This descriptor was especially strong among those whose ability to lead an independent life had been premised largely on their ability to remove themselves from the presence of others in order to eliminate stress when necessary.
To me such descriptions pose some serious questions around aging and autism that need to be addressed. For example :
What is on offer for adults with High Functioning Autism who have extreme sensory sensitivities to noise and/or the presence of others?
What would happen in the event of a meltdown in such an environment?
Are aged care facilities really geared up for handling the multiple sensory issues and sensitivities that adults with High Functioning Autism can experience?
Research is increasingly showing that when it comes to the concerns of those with High Functioning Autism, we are no longer just talking about the concerns of a small group of people who crave solitude.
Rather, research is beginning to uncover the legitimate concerns of an increasingly growing number of adults who not only do not want to be placed in aged care facilities, but who doubt their very ability to survive in them.
These are people whose very quality of life can sometimes depend on their capacity to remove themselves from the presence of others. Their concerns are real and they need to be addressed.
Is this something any of you have thought about?
Have you read any articles that tackle the issue of aging and autism?
If so I’d be extremely interested in hearing more about your views on aging.
Thank you for taking the time to read this post.
I’ve become just a little bit fascinated over the last few years with the rise in the number of TV shows portraying Asperger’s Syndrome and the way they are going about it. Sometimes they get it oh so right and sometimes they get it oh so wrong. So who are your favourite Aspie TV characters and which shows do you think are getting it right and why?
My pick of the characters so far are:
Temperance Brennon from Bones – Once again strong independent logical female characters get me every single time. I also think part of the charm of her character can be found in the gentle acknowledgment of her propensity toward logic at the expense of emotion that others show her in their own unique ways.
Doc Martin- Though I’m not all together sure the character is meant to be understood as an Aspie but never-the- less I enjoy the way he ignores social niceties and his complete and at times willful inability to pick up on things such as body language.
Of course Max on Parenthood – Simply because I can so relate to some aspects of his character and the broader parenting dynamic. Loved the episode where Max’s parents went to visit another Aspie family for the first time. If you’ve seen it then you’ll know what I mean.
There must be other shows out there that I’m missing out on….. The Big Bang theory springs to mind and yes I would love to watch it but for some odd reason my son is extremely adverse to ‘Sheldon’s’ character……. Hmmmmmm…….. Go figure……..
Parents of autistic children form one of the most highly scrutinized and criticised parenting groups within our society. Since the 1940’s parents of autistic children have copped it all in what can only be seen as a sustained onslaught of social and personal blame. From the representation of them by Leo Kanner as cold and unattached ‘refrigerator mother’s’ and Bettelheim’s concept that autistic children lived in fear of their parents to today’s representation of them as restrictive, over protective helicopter parents, the blame game still appears to be the same. If any other minority parenting group within society were being so constantly scrutinized and criticized, the red flags of discrimination, social inequality and social injustice would be flying everywhere. Yet for us they are not.
For the past forty years parents of autistic children have had to try and navigate their way through the contradictions caused by the opposing views of disability offered up by proponents of the Social Model of Disability (Oliver, 1983) and the long-standing Medical Model of Disability. Both models claim to hold an understanding of what disability is, how it originates and how being defined as disabled impacts on the lives of those so labelled. Both claim to advise parents on the correct ways to raise children with disabilities yet neither model adequately encompasses the terrain that parents of children with cognitive disabilities/differences must navigate (Goodley, 1989).
The only element that both models of disability appear to agree on in regards to autism is the mythological notion that somehow, somewhere along the way, parents are to blame. Be it either through parental dysfunction or the assumed position that all parents are buying into the labelling process and thus making their children as disabled as possible (Priestley, 1996). To add to this mix we now have the voices of adults with autism spectrum disorders (ASD) and Asperger’s Syndrome regularly criticizing and calling into question the practices of autism parents based on their own childhood experiences.
Whilst I appreciate and value the many positive insights and understandings of autism and Asperger’s Syndrome that the voices of adults with ASD have provided I must also admit that I am growing weary of the negative attitudes toward parents that some promote. To these adults I would ask simply that you teach us about your experiences and perspectives but please do not preach to us about what we should and should not be doing for our children.
Whilst your experiences provide a valuable resource for those of us with autistic children you need to understand that your experiences are just that. They are your experiences and should not necessarily be held up as a template for the experience of every child on the autism spectrum.
We now know enough about autism to know that it contains a spectrum of characteristics and traits. Yet if we only ever take in the perspectives of those with high functioning autism how are we to accommodate or fully understand the needs of those on the low functioning end of the spectrum? I for one am tired of people believing that they know best how to accommodate my son because they’ve read a book, seen a movie, or heard a radio interview with an adult with high functioning autism who said…..
I know that those of you who do speak out are not responsible for the manner in which society digests your information but perhaps there is room here to make a clear distinction between the impacts that either having high functioning or low functioning autism has had on your life course.
An adult with high functioning autism will have very different levels of ability to an adult with low functioning autism. But we only ever hear about high functioning autism due to the fact that there are so very few, if any, personal experiences being reported by those with low functioning autism. Reports regarding the experiences of those on the low functioning end of the spectrum tend to be written by parents and given that parents of autistic children hold a marginalized and maligned position within society, they tend to be discounted as inaccurate renditions of such a life. So we are left only with reports of the autism experience as given by those on the high functioning end of the spectrum.
Yet attempting to understand the experience of autism only from the high functioning end of the spectrum leaves a significant hole within the fabric of our societal understanding of not only the entire autism spectrum, but the entire autism parenting experience. This leads to the miss- recognition of the needs of those on the low functioning end of the spectrum and encourages society to sweep all children with autism and their parents into the same basket
The premises spouted by proponents of the social model of disability that all children with disabilities need to attend mainstream schooling in order to prepare them for full participation within society as adults (Oliver,1983,Priestley 1996) is a classic example of the dangers of this line of thought. Whilst this theory of “all in” may well be valid for every form of disability that does not impact on cognitive functioning it is not going to be appropriate for children with severe cognitive conditions. It is simply not helpful, fair or appropriate to send a child with low functioning autism to a mainstream school if it’s going to cause them severe anxiety and prompt self-harming behaviors due to over stimulation.
The erroneous understanding brought about by the levelling off of all disabilities into the one specific category of understanding is causing society to enact the closure of many special needs schools. To this move I would simply ask… How can it be seen as progressive, supportive or appropriate to force a child with extreme sensory and cognitive issues into an environment that does not adequately cater to their needs? You cannot fix low functioning autism by pretending that it does not exist. We need to acknowledge that children with low functioning autism require additional measures that may not be found in the common classroom.
For this reason, whilst I understand the benefits to be found in mainstreaming children with high functioning autism, I also fully support a parent’s right to choose the schooling environment that is best for their child. This includes choosing a special educational placement if it is right for that child.
I know many would consider the reinstating of a parent’s right to choose so-called special or “segregated education” to be a step backward but I view it more as a step toward the recognition of the need for a full, clear and rational understanding of all of the issues involved in parenting a child with autism. I see it as defending my child’s right to feel safe and comfortable in an environment that does not trigger or overwhelm him.
Not every child with autism can cope with a mainstream environment and to think that they can or should be able to cope, based on the opinions of those within the social model of disability or on the experiences of adults with high functioning autism, creates a dangerous misnomer for educators, policy makers and parents alike.
Among the many things that the feminism has taught is the lesson that no matter how big a majority you may speak for you can never simply just ‘read from the middle’. You must be able to accommodate all the elements that pertain to any given issue.
I would say the same is true when it comes to parenting a child with autism and deciding what is best for them.