Tag Archives: ASD

Aspect Research Overview and Findings Related to Gender, Age, Marital Status, Parenting and Age of Diagnosis

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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.

Overview of the study

In its entirety, the We Belong study comprised three complementary arms of data collection:

  1. A survey of adults with Asperger’s Disorder and high functioning autism.
  2. A survey of parents of adults with Asperger’s Disorder and high functioning autism.
  3. Telephone interviews with service providers who have professional dealings with adults with Asperger’s Disorder and high functioning autism.

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.[1]

Eleven per cent of respondents indicated that they had at least one child aged 16 or under.

Three-quarters (75 per cent) of respondents gave their diagnosis as Asperger’s Disorder, 18 per cent as Autistic Disorder, and two per cent as PDD-NOS.

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.

[1] 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.

Pathological Demand Avoidance. PDA. Could this be the answer to my daughters behavior ?

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2012 Behaviour Matrix copy

 

As some of you will know, I’ve been desperately seeking help for my daughters increasingly out of control behavior and, up until recently, finding little to no help at all.

One of the biggest problems that I’ve faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief out there that a child of her age could act out so violently without cause.

 

Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), have sought to turn the ‘blame’ for my daughters behavior back on to me as a parent.

 

Clearly I must have been doing something wrong, like not standing up to her firmly enough, not providing enough discipline or maybe as a parent even failing to impart to her the correct and expected standards of behavior.

 

Perhaps, if my daughter’s behavior is abusive and aggressive, then it must be because I, as her mother am also abusive and aggressive?

 

Well, I’m not abusive or aggressive. I’d much rather run from a fight than jump up and start one.

 

I’ve not failed to impart to her the correct and socially expected standards of acceptable behavior.

 

As I have said before in previous posts, my daughter knows right from wrong.

 

Yet when she gets in a rage, or a ‘meltdown’, all bets are off and she can and will do anything to express her anger.

 

So after having it suggested to me that she may have Asperger’s Syndrome, by the one and only health care professional who took me seriously, and that her ‘meltdowns’ may be occurring as a result of her increasing inability to cope with a world that she’s struggling to comprehend, I thought well, I already know those things about her.

 

And I undoubtedly agree that she probably does have AS, and I have already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can when she wants too, cope very well with social situations and she can, when she wants too, be very agreeable, happy and easy to get along with.

 

What she can’t seem to do is understand that other family members have rights and needs too. Especially if those rights and needs conflict with anything that she wants to do.

 

So I’ve been left asking myself just what is going on here?

 

Yes she may have AS but is she now so spoilt rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to misbehave whenever it suits her?

 

Have I been such a bad parent that I’ve taught her to abuse others whenever she can’t get her own way?

 

And does she even know any longer what her own way is because nothing and mean nothing calms her down once she’s exploded.

 

Her behavior has reached the point where the slightest things set her off and there’s absolutely no rhyme or reason to it at all.

 

I’ve lost the ability to predict or fore see  where the time bombs are in her life.

 

I can’t defuse that which I cannot see.

 

Therefore, I can not stop her rages from occurring.

 

Nor can I bring her out of them.

 

Nothing it seems brings her out of her rage until she herself is ready to come out of it.

 

Any attempts to help her calm down once she’s in a rage are rejected and usually result in an escalation of her bad behavior.

 

I have quite literally being pulling my hair out trying to understand why she blows up at the drop of a hat and why once she’s up in the air, nothing can bring her back down.

 

Not even letting her have her own way with whatever it was that set her off in the first place will work.

 

This behavior has both scared and confused me.

 

Scared me because when she goes off she becomes incredibly violent.

 

Confused me because if it were just a matter of her wanting to always get her way, then why won’t giving her what she wants calm her down?

 

To me these things just did add up.

 

And then I read this post from http://bipolar-truth.com/2012/08/15/pathological-demand-avoidance-pda/   on Pathological Demand Avoidance and the pennies began to drop, and drop and drop.

 

“These children are said to resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.”

 

After reading this my jaw dropped, for this is exactly what  I am seeing in my daughters odd set of  behaviors.

 

One minute she’s my lovely girl,  and she’s calmly and rationally, though sadly accepting her father’s impending marriage,  the next minute she’s plotting to destroy him or blowing up at me over the loss of a her hair tie (of which we have a jar full, all the same size and all the same color).

 

And then I read the next part of the post;

 

“In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills and seem to have some but often significantly impaired theory of mind. They often engage in manipulative, domineering behaviour.”

 

Can you hear the sound of still more pennies dropping because for the first time, in a very long time, I think I finally can.

 

And then I read from yet another blog at http://islingtonhomeschoolmom.wordpress.com/2012/04/10/understanding-pathological-demand-avoidance-by-christie/ that;

 

“PDA is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. Unlike other ASD children those with PDA appear to understand emotions and communication…to the point of being manipulative.”

 

This was followed by the additional understanding that:

 

“These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.”

 

Then from yet another wonderful blog http://alexcparsons.wordpress.com/2011/12/20/article-from-the-times-on-pda-extracted-from-pay-wall/I found the following information.

 

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“Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent…. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.”

 

Still more pennies  were dropping and then I read this, written by a mother about her young daughter:

 

“She was totally dictating our lives – what I wore, if I could make a phone call, who could come round.”

 

For me this was the clincher, the thing that’s making me believe that PDA could be the answer, because these are the behaviors that my daughter regularly attempts to apply to me.

 

She’s even gone as far as taking away my phone and my hiding my car keys so that I can’t leave the house or  call for help.

 

I know that to most people it sounds absurd that a child can create so much turmoil, especially a girl, especially a girl under the age of 13, but I’m telling you they can and I know now that I’m not the only parent experiencing this.

 

There is a term for it.

 

Pathological Demand Avoidance.

 

And I am not alone.

 

So thank you to each and every blogger out there whose posted on this topic and a special thank you in recognition and gratitude to those amazing bloggers whose words I’ve quoted.

 

You have all given me a much-needed source of information, hope and inspiration.

 

Related articles

 

 

 

Autism Poetry Challenge Winners

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Firstly I’d like to say a big thank you to the following bloggers who all submitted a poem for me to share with my son.

http://somkritya.wordpress.com/2011/06/21/autism-is/

http://boomiebol.wordpress.com/2012/04/09/national-autism-awareness-month/

http://skipmars.wordpress.com/2011/11/05/all-the-clocks-are-broken/

http://skipmars.wordpress.com/2012/02/01/the-birds/

http://skipmars.wordpress.com/2012/05/07/the-roller-coaster/

http://skipmars.wordpress.com/2012/05/11/the-black-cats-tail/

http://peacefulpaige.wordpress.com/

http://rosewinelover.com/

http://sofalogical.wordpress.com/

http://whispersinthewind.wordpress.com/

Thank you all so very much for the emotion, love and understanding that  you have all  shared. As far as I’m concerned you are all winners.

The poems my son responded to the most were the ones that reflected his great love for all things Dr Zeus ……..

So the winners are…..

The beautiful Missus Tribble at http://rosewinelover.com/ with her poem….

 From The River To The Sea

Words flow and babble in my mind

Chattering like a gentle brook

The swelling river comes to play

Taking my words to make them flow

Life’s words the river carries along

To make a story, or perhaps a song

Gentle as a lover’s touch

My words are bouyant and carried thus

My words reach out beyond the void

Reaching out to guide and teach

They fill the ocean, swell and grow

And wash up on a gentle beach

©Gemma Wright, 2012

And the wonderful Skipmars at http://skipmars.wordpress.com/ for his poem…..

All The Clocks Are Broken

All the clocks are broken,

Least, near as I can tell,

Oh sure, they look like they’re okay

But they’re not working well.

For instance, they begin to slow

Just ‘fore each special day

(Like Christmas, or the end of school,

Or near my next birthday).

A gear gets stuck, the clock hands crawl –

Ten minutes lasts an hour . . .

I’m telling you, as far as Time,

The clocks have too much power!

Like when you need some extra ticks

To take a test, or sleep –

Those hands fly round their circled field

Like dogs loosed from their keep.

I know it’s a conspiracy,

A mean and nasty plot,

To shorten or to lengthen

All the days and hours I’ve got.

It’s not just me. There’s others know

(Some grownups and some kids);

That tactics of time monitors

Have left us on the skids.

Like, when she visits every year

My Gramma says to me,

“My gosh, the time has sure flown by,

You’re taller than a tree!”

And Dad, when Mom and he are late

To some bigwig affair

Complains, “She sets her clock for turtle time,

We’ll never make it there!”

The problem is, near as I know,

There is no way to trace

The slowings and the goings

On any timepiece face.

When one speeds up they all agree,

There’s no clockwork dissent.

When one slows nearly to a stop

They concur and they consent.

So here we are, the lot of us

At the mercy of these fiends

That speed and slow at their cruel whim,

And dangle us like beads.

We could, of course, rebel and fight –

Resist the time regime;

Not worry ‘bout how long or when,

But sit back, quite serene.

Give Time its place and move along

As Life will lead us through;

And all the clocks, through ticks and tocks,

Will give us time that’s true.

The reality, it’s sad to say,

Is we won’t change one bit,

But continue on the status quo

And here, in Time, we’ll sit.

by L. Stewart Marsden

Once again ……Thank you all so much for being a part of our blogging community and for taking part.

If you’d like to go back and check our all of the gorgeous and inspiring poems that were submitted please feel free to follow the original  link to do so.

http://seventhvoice.wordpress.com/2012/05/10/autism-poetry-challenge/ 

With much warmth and appreciation,

Seventh and Son = )

The experience of discrimination and disablism: As a parent does it happen to you?

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I recently read a research article that  offered up some interesting food for thought for me as the parent of a child with autism. It got me thinking once again about the numerous ways that parents are subjected to an insidious, though often not spoken about, form of ‘disablism’ – a particular form of discrimination derived exclusively from negative reactions towards those who are differently abled.

It also got me  questioning  just why it is that parents of children with autism are routinely seen as being somehow immune to the experience of disablism.

In their work ‘Repositioning mothers: mothers, disabled children and disability studies’ Sara Ryan & Katherine Runswick-Cole (2008:201) argue that the continued representation  of  parents as  ‘oppressors’  who perpetuate disablism upon their children, by theorists applying the social model of disability,  has effectively placed parents outside of the disability movement.

They suggest this is due to the division between the impaired and the non-impaired that the social model of disability creates (Ryan & Runswick-Cole, 2008:199). Under such a division, parents of disabled children are considered non-impaired and therefore positioned as being a causal factor in the discrimination and disablsim their children with impairments face (Ryan & Runswick-Cole, 2008:199).

Ryan & Runswick- Cole (2008:201) argue that in doing so, the social model of disability underestimates  parental understandings of disability  in a manner that takes little to no account of the  broader ways acts of disablism are both perpetuated upon and experienced by parents of disabled (differently abled)  children themselves.

Do you think that you as a parent have experienced discrimination/disablism?

If so what form has it taken?

 

 

 

The Socially Sanctioned Persecution of Individuals with Autism

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I’ve been thinking a lot lately about how my son’s bullying  has been handled by his school over the past few years. It seems to me that his school has applied a constant pattern of denial, inaction and defense of the ‘bullies’ instead of acknowledging the harm caused  to him by their actions.

It has appeared at times, as if the school were sanctioning the other children’s bullying behaviors by refusing to take action against it.

In this sense I view the school as failing to recognize and protect my son’s right to be educated in a safe environment free of discrimination.

If access to a safe education, free from discrimination and harassment, is now considered a fundamental human right, then why is my son being expected to constantly deal with the bullying behaviors of others whilst having his own need for protection denied by those in positions to do otherwise?

Just what is the deal here?

Is it simply that, because my son has Autism, the staff and students at his school believe him to somehow be less worthy of the same level of respect and protection they would offer any other child?

If so, then does  this form of discrimination also indicate the continued existence of  the socially sanctioned persecution of those who are considered  ‘different’?

Wasn’t the aim of educational integration to create tolerance and understanding?

Who exactly is being shown tolerance when it comes to bullying?

I know it’s not my son .

It’s the bullies who are being shown that the school will tolerate their insidious behaviors in actively harming a defenseless child with Autism.

Will these bullies grow up believing that society will tolerate the abuse of an adult with Autism because their school tolerated the abuse of a child with autism?

Just what are the lessons that  our schools are teaching to our children?

 

Autism : Extreme Love – Louis Theroux’s Documentary

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This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.

It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.

Theroux does more than just talk  to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.

In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.

It is by far the most balanced and revealing documentary on the Autism experience  I’ve seen in a very long time.

I thoroughly recommend it and would love to hear your thoughts on this or any other  documentaries, movies or books you would recommend?

Prism

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This is the dance of our life,

The eternal inner child,

Always waking the external giant,

Creating the crashing clash of demands,

That hold me captive,

In your hands,

I wait for you to open,

Or shut,

As you will,

It shall be your choice,

For my voice is small,

And your circumstances  large,

So I will dance around your perimeter,

Twisting in the breeze of your breath,

And I will sit within your silence,

Not touching your hand,

Yet forever reaching deeper,

Into the prism,

Of Autism,

Which makes all light spin,

As you melt once again,

Into your rainbowed way of being

And in watching all of your colours blend,

My own understandings,

Of Autism,

Are beginning.