Tag Archives: Autism spectrum

Words from a newly diagnosed Forty Something Female Aspie

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I call myself a newly diagnosed Aspie because although I have self identified as an Aspie for the last year or so, I hadn’t been formally diagnosed.

Now I am and suddenly my world has changed again.

Previously, in my naivety, I hadn’t thought that receiving a formal diagnosis would make any difference to me at all.

Being as I am a woman in my forties, whose already lived through the nightmare of constantly trying to figure out the hidden rules of social interactions and failing miserably at the task, I’d thought that reaching an understanding of myself, for my own sake, was enough.

And for some no doubt this is true.

Yet I also now realize that not being formally diagnosed held me back in ways that worked to my over all detriment.

You see, I never really felt like I could tell anyone about my own inner discoveries.

I held a constant fear that people would laugh at me or not take my self diagnosis seriously if I told them.

That they would instead peg me as just another maladaptive loser in life’s lottery looking for nothing more than a convenient excuse to explain my own social inadequacies.

I know now, beyond the shadow of a doubt, that receiving a formal diagnosis has finally laid all of these internal fears to rest.

It doesn’t matter to me any longer whether people believe me or they don’t.

It doesn’t matter to me whether or not some will choose to look down their noses at me for finally openly acknowledging that I am different.

Or that I view the world in a different way to that which others do.

Or that I’d rather stay home and read a good book over going out to dinner with a group of people who leave me either constantly lost or eternally bored by their conversations.

You see, I don’t care who’s getting it on with who.

I don’t care what the latest celebrity gossip is.

I don’t care how many shoe stores person A had to go to before finding the perfect shoes to match her outfit.

And I don’t care about shopping lists, hairstyles, the latest invention in anti-wrinkle creams or the newest foundation fades.

I’ve already grown so long past  tired of having to pretend that I care about any such mundane things in order to pass as “sociable” that these days I don’t even bother to feign interest in it.

I’ve been told so many times by so many different people, that I come across as being  “aloof”, “disinterested”, “superior” or just plain “rude”, that I’ve lost count.

Truth is, that while I may indeed at times be entirely disinterested in the conversations going on around me, it’s not because I don’t care for the people who are speaking their empty words at me, often times I care deeply about those people, I just don’t know how to connect with them and they never seem to notice that I need more than idle gossip to get me through my day.

As for being “aloof” well, I guess anyone who hangs back while conversations are going on around them at lightning speed and always chooses to take the seat closest to the exit allowing for the fastest get away possible, may indeed appear that way.

Yet I am not “aloof”.

Nor do I feel myself  to be “superior” to anyone.

I mean seriously, how on earth can anyone who struggles so much to understand the invisible realms of society, ever consider themselves to be “superior”?

Truth be told, I’ve spent a great deal of my life feeling absolutely inferior to everybody else and believing myself to be “dumb”.

Going to University as a mature age student was nothing short of a huge leap into the great unknown for me.

I felt for sure that I would fail every single class in my first semester and then that would be that and I would know for sure the problems I’d been having were all indeed because I was dumb.

To my great surprise I didn’t fail anything.

Well not academically, anyway.

I discovered that my analytical and overtly logical way of looking at the world did indeed hold more than some merit.

After this discovery, I then came to the conclusion that, whilst I wasn’t dumb, I never the less  had what I began referring to as  a very low social IQ.

It wasn’t until I’d begun work on my Honor’s Thesis that I first became  aware of the traits of Asperger’s in women.

I can not even begin to describe to you the feeling of ‘coming home’ that this awareness arose in me.

It was as if someone had finally connected all the missing dots of my life  that had puzzled me so and at last I was able to see the bigger picture.

Those discoveries were made almost 3 years ago.

Since then I have spent endless hours researching Asperger’s Syndrome in Women.

How it’s been denied as existing in women  in the past.

How it’s been a constant source of almost criminal medical negligence for far too many women who have been left at the mercy of a world that’s turned it’s metaphorical back on them.

How the inability and unwillingness of many within the medical fraternity to understand and accept that Asperger’s can present differently in women and girls than it does in boys and men, has caused entire generations of women to remain either undiagnosed or completely  misdiagnosed with errant and in most cases imaginary personality disorders.

For all of these reasons I’d decided that I did not want to seek a formal diagnosis by placing my life in the hands of  a medical establishment whom history had already shown had so consistently gotten the diagnosis of Female Asperger’s so wrong.

However, my line of thinking changed when I began to notice many AS traits in my own daughter.

I had to ask myself whether or not I could stand idly  by and watch her struggle valiantly to fit into a world that she could no longer make head nor tail of?

Could I stand by and watch as  sadness and confusion began to daily fill her eyes without doing anything to attempt to change it?

No. Despite my fears of  her being misdiagnosed. I could not stand by and watch my daughter fall into the very abyss that I myself had only just managed to crawl out of some forty years later.

The journey toward diagnosis for both of us has by no means been an easy one.

It has taken over 2 years of trying to get help for my daughter, of being told over and over again that my daughters reactions to this world can be explained away by either poor parenting,  my divorce or some other hidden form of family dysfunction, and that she did not fit the criteria for Asperger’s Syndrome simply because she wore make-up and cared about her appearances.

My pleas to the contrary, that she was merely trying to fit in the best way she knew how,  went unheeded.

It wasn’t until my daughter entered High School and not long after tried to take her own life, that someone out there finally listened to my many pleas for help and began instead to try to form a genuine sense of understanding as to what  it was my daughter was actually experiencing.

No child should ever have to feel so lost within this world that  they view taking their own life as the only way of taking away their suffering.

And she was suffering.

Yet even when I’d done my best to point this out to those who were supposed to help, they continually denied my daughter even the smallest pieces of understanding and instead chose to blame the very person who was laying themselves on the line by asking for their help in the first place.

It was obvious to me that her peers had moved past her capacity to socially keep up with them.

Despite this,  no matter how many times I tried to explain my daughters predicament to the professionals that be, I found myself   ignored time and time again.

Yet my daughter was lost and alone in the playground of  what she’d been told by others would be “the best days of her life”.

It’s little wonder, given this context, that she did what she did.

Fortunately I got to her in time and she’s now being given the help and understanding she required years ago.

She has been diagnosed as having Asperger’s Syndrome.

I can not even begin to tell you how much it angers me that it took such drastic action on her part before anyone saw fit to truly listen to her, to me, to us.

It saddens me that there are so many girls and adult women out there who are still suffering from this willful form of diagnostic neglect.

In my case, as an adult, I chose not to come forward out of fear of being misdiagnosed.

Yet when I did come forward, for my daughter’s sake, we both initially had our experiences marginalized and ignored.

It is this medical marginalization that very nearly cost me and my daughter, her life.

So if you are working in the medical profession as Psychologist, a General Practitioner, a Pediatrician, or even  simply working as a counselor…… please, please, please,………..

Listen……………..

Take action……….

It’s not always about dysfunctional families and girls do experience Asperger’s Syndrome………… and it’s got nothing what so ever to do with the ability to wear make-up!!!!!!

And if you are a mother and you think you may have Asperger’s Syndrome, be brave and take the plunge toward receiving  a formal diagnosis because you never know whose life you may be saving by doing so.

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Crappy Parenting is a Spectrum Disorder

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Reblogged from Laughing Through Tears:

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Dear Random Internet Strangers:

Please stop telling me that I don't love my children. It's sort of judgmental, considering how you've never met me. And while you're at it, please stop telling me that I'm a bad parent. That's just a given.

April's been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we're ruining our kids.

Read more… 719 more words

This post is similar to the post I wrote a few weeks back......http://seventhvoice.wordpress.com/2013/05/01/love-me-or-hate-me-this-is-my-response-to-a-comment-that-to-me-tipifys-the-worst-aspects-of-the-autism-community/
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Differences between Aspergers and Autism -‘fruit salads’?

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In one of my books, The Jumbled Jigsaw, I presented a range of conditions commonly collectively occurring in those with autism and Aspergers. I was asked about the differences between an Aspergers (AS) ‘fruit salad’ and an Autism ‘fruit salad’. As an autism consultant since 1996 and having worked with over 1000 people diagnosed on the autism spectrum there are areas that overlap, areas where similar can easily be mistaken for same, and areas that are commonly quite different. Some with AS can present far more autistically in childhood but function very successfully in adulthood. Some with Autism can have abilities and tendencies commonly found in Aspies and some will grow up to function far more successfully than they could in childhood but, nevertheless, when together with adults with Aspergers they each notice that the differences may commonly outweigh the similarities. Generally the more common differences are:

ASPERGERS
Originally called ‘Autistic Psychopathy‘(now outdated)
commonly not diagnosed until mid, even late childhood.
lesser degrees of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
dyspraxia
mood, anxiety, compulsive disorders commonly onset from late childhood/teens/early adulthood as a result of bullying, secondary to social skills problems, secondary to progressive self isolation and lack of interpersonal challenge/involvement/occupation.
scotopic sensitivity/light sensitivity more than simultagnosia
most have social emotional agnosia & around 30% have faceblindness but usually not due to simultagnosia
literal but not meaning deaf
social communication impairments, sometimes selective mutism secondary to Avoidant Personality Disorder (AvPD)
sensory hypersensitivities more than sensory perceptual disorders
higher IQ scores due to less impaired visual-verbal processing
tendency toward Obsessive Compulsive Personality Disorder (OCPD), Schizoid rather than Schizotypal Personality Disorder and commonly Dependent Personality Disorder to some level.
higher tendency to AvPD rather than Exposure Anxiety
Alexithymia is common
ADHD common co-occurance but may be less marked than in those with autism.

AUTISM
Once known as Childhood Psychosis (now outdated)
generally there is always some diagnosis before age 3 (those born before 1980 were still usually diagnosed before age 3, although commonly with now outdated terms like ‘psychotic children’, ‘disturbed’, ‘mentally retarded’, ‘brain damaged’.
higher degrees and severity of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
mood, anxiety, compulsive disorders commonly observed since infancy
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity
verbal agnosia/meaning deafness
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)
lower IQ scores associated with higher severity of LD/Dyslexia/agnosias
tendency toward OCD/Tourette’s, also higher rate of Schizotypal PD, DPD is common and tends to be more severe
higher tendency to Exposure Anxiety more than AvPD
higher tendency toward dissociative states (dissociation, derealisation, depersonalization)
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight
ADHD extremely common co-occurrence

This post is from Donna Williams’ Blog

Congratulations on making it this far down the post.

Okay so now here’s my bit.

It’s question and answer time for you all once again because as we all know, inquiring minds simply always want to know more.

So apart from Donna’s list, what do you think are the key differences between Asperger’s Syndrome and Autism?

Do you think they’re aren’t any major differences at all?

Or do you think there are many?

Are you in favor of doing away with the term Asperger’s Syndrome and replacing it with  High Functioning Autism instead?

Do you think mixing the two, up until now, distinctly different ways of  understanding the needs of those on the Autism spectrum will help or hinder public awareness and understandings of Autism?

Would love to hear  your views on this.

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Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V

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Illustration: Matt Golding.

Illustration: Matt Golding.

“Australia‘s foremost authority on Asperger’s Syndrome has warned of ”tragic consequences” if governments use the new narrower diagnostic criteria for autism to cut funding for children at the mild end of the spectrum.

”A child diagnosed with apparently mild autism may have challenges that are profound to them. If they are offered little or no support, there potentially could be tragic consequences,” Professor Tony Attwood told the new edition of the Australian Autism Handbook, which will be published on Monday.

Changes to the criteria for the diagnosis of autism – which unlocks $12,000 in funding – are due to come into effect in May.

According to Australian and American studies, the changes are likely to exclude the highest-functioning 9 per cent to 23 per cent of autistic children, many of whom would have received a diagnosis of Asperger’s Syndrome or high-functioning autism under the old criteria.

Those higher-functioning autistics are likely to receive a diagnosis of social communication disorder, as distinct from autism spectrum disorder.

The federal government has yet to decide whether children who have received the lesser diagnosis of social communication disorder will qualify for Helping Children with Autism funding.

”At worst, 75 per cent of those with a current diagnosis of Asperger’s will no longer meet the criteria for an autism spectrum disorder diagnosis under the new criteria,” Professor Attwood said.

The HCWA program has been in place since 2008 and has helped 19,000 children gain access to early intervention services that vastly improve their chances of fitting into mainstream schooling. It is estimated one in 100 children in Australia has autism, though the most recent survey in the US put the rate there at one in 50. Boys are afflicted more often than girls.

Professor Attwood’s caution is supported by the Royal Australian and New Zealand College of Psychiatrists president Maria Tomasic, who said: ”The diagnostic criteria suggests disability may be similar to that of Asperger disorder and will require comparable support. As social communication disorder is a new diagnosis, we do not yet know its validity or associated disability.”

Minister for Disability Reform Jenny Macklin said through a spokesman that her department would ”continue to monitor international best practice and liaise with the Department of Health and professional health bodies about the appropriateness of the tool for diagnosing autism in Australia”.

Sydney mother Kristen Callow knows the trouble parents of newly diagnosed children might find themselves in if funding is cut. Her daughter Juliet, 7, could read at age two but, despite having 500 words in her vocabulary, could not communicate ”I want juice”. She was diagnosed with Asperger’s Syndrome at age 3.

”It could very well be that we would have missed the boat,” Mrs Callow says. ”It’s hard to argue that a profile like that does not need help.

”We got a lot of ‘she is fine’, a lot of dismissal of our concerns. Because she had 500 words, our paediatrician at the time was totally unconcerned.”

After Juliet accessed the early intervention program she has been able to attend mainstream school.

Despite initial difficulties with anxiety and adapting to the social environment, Mrs Callow says Juliet is doing very well.”

This article has been written by Kathryn Wicks, co-author of Australia’s Autism Handbook

Read more: http://www.theage.com.au/national/warning-of-tragic-outcomes-in-narrower-criteria-for-autism-20130330-2h0ab.html#ixzz2RZ8btaHl

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My Child's Diagnosis Didn't Give Me Depression! The SEN System Did That!

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Reblogged from A boy with Asperger's:

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Its funny, Just recently I found myself engaged in conversation With a fellow parent at my daughter's school. We were discussing depression, a subject I won't hide from!

This parent reads my blog and is aware that depression has sometimes been a part of my life... More so than not.

So, if I'm ever asked a question I will try to answer it openly and Honestly.

Read more… 573 more words

"You think a diagnosis is going to change things. The right help and support will come and be handed to you on a plate… Well dream on, it most certainly won’t! I learnt almost instantly, that for some, my sons diagnosis wasn’t worth the paper it was written on."
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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.

Introducing Aspect Australia’s Research Report into the lives and experiences of adults with high functioning autism – “We Belong”.

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We Belong is the first large-scale research study in Australia to describe the life experiences, aspirations and support needs of adults who have an autism spectrum disorder (ASD) with no co-occurring intellectual disability. Through a comprehensive body of self-report data, biographical stories and personal reflections, it offers a window into the lives of Australian men and women who experience the daily challenges of a largely invisible, frequently misunderstood, and yet highly complex and nuanced disorder.

Aspect Australia’s Autism is a lifelong developmental disability that impacts on the way a person understands, communicates with and relates to others and the world around them. Recent studies indicate that around one in 100 people has some form of autism, with diagnosis rates acknowledged to be on the rise (Williams et al., 2008).

The clinical term ‘Autism Spectrum Disorder’ (ASD) encompasses three diagnostic categories, as listed in the current edition of the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV; American Psychiatric Association, 1994):

The clinical identification of ASD is based on a ‘triad of impairments’, namely:

  1. Qualitative impairments in social interaction.
  2. Qualitative impairments in communication.
  3. Restricted, repetitive and stereotyped patterns of interests, activities and behaviours.

Autistic Disorder (or ‘classic’ autism) is characterised by marked impairments in all three domains of the triad, with symptoms generally evident prior to three years of age. Asperger’s Disorder entails the same core features as Autistic Disorder, but without any significant delay in early language acquisition, cognitive abilities or self-help skills. A diagnosis of PDD-NOS may be applied when an individual presents with deficits in social interaction and in at least one other area of the triad, but does not meet full criteria for either Autistic Disorder or Asperger’s Disorder. For this reason, PDD-NOS is sometimes referred to as ‘atypical autism’.

As denoted by the term ‘spectrum’, autism is a highly heterogeneous disorder, meaning that every individual with an ASD will have a unique profile of strengths and challenges.

Although there is some considerable overlap between autism and intellectual disability, studies have estimated that around 60 per cent of people diagnosed with an ASD have normal or above average intellectual ability (Chakrabarti & Fombonne, 2005).[1] These individuals are often informally described as having ‘high functioning autism’. By definition, the majority of people diagnosed with Asperger’s Disorder will fall into the ‘high functioning’ group.

Applying the ‘one in 100’ autism prevalence rate to the Australian context translates into around 220,000 people nationwide who have an ASD, of whom 60 per cent, or 130,000, can be considered high functioning. Of these, approximately 97,000 are aged 18 years and over.[2]

Research on adults with autism

Although the autism research field has traditionally been dominated by studies focusing on children, there is now a steadily growing body of literature investigating the presentation, experience and correlates of ASD in adults. Many studies in this area have taken a fairly narrow topic focus or worked with a relatively small number of participants, or both. Notable exceptions include:

  • a UK-wide survey of 237 adults with Asperger’s Disorder conducted by researchers at Sheffield Hallam University and covering a broad range of topics, including diagnosis, higher education, employment, accommodation, social life and relationships, the legal system, and mental health (Beardon & Edmonds, 2007);
  • the National Autistic Society’s I Exist project: a UK-wide survey of over 1,400 adults with autism and their parents, aimed at raising government and public awareness of service and support needs for this group;[3]
  • the Adolescents & Adults with Autism (AAA) study at the University of Wisconsin, which is collecting data from 405 participants over a five-year period, with a particular focus on documenting the challenges and impacts for families supporting a young person or adult with ASD.[4]

In addition, some authors have undertaken large-scale literature reviews in an effort to synthesise research findings across this area: relevant reports include Barnhill (2007), Stuart-Hamilton et al. (2009), and Howlin & Moss (2012).

Together, these studies and reviews have highlighted the vastness and complexity of adult autism as a research field. Some of the key issues that have been explored in this area include:

  • mental health and emotional wellbeing;
  • social participation;
  • barriers to employment;
  • access to and eligibility for services;
  • choice and control over interventions and supports;
  • rights and discrimination.

In the Australian context, these themes have been echoed in state government reports, including Stronger Together: A New Direction for Disability Services in NSW 2006-2016 and the Autism State Plan developed by the Department of Human Services, Department of Education and Early Childhood Development, and Autism Victoria in May 2009. Priority areas for reform identified in these reports include:

  • social inclusion and participation;
  • services and supports that facilitate, rather than act as barriers to, participation;
  • strengthening the ASD experience of the workforce;
  • specialist support to enhance educational opportunities, including during transition stages;
  • pre-employment and employment support, including workforce capacity building;
  • strategies to effect successful participation in the community.

Stronger Together comments perceptively that individuals with ASD tend to “fall between the cracks of disability service provision”, reflecting a lack of professional understanding about the needs of this group that results in their exclusion from services. It is for this reason that the report identifies an urgent need for “development of a comprehensive evidence base about autism spectrum disorders”.

Most of the studies listed above have profiled adults from across the autism spectrum, including those with profound intellectual impairment and significant support needs. In the light of this, it is important to acknowledge research that suggests if anything, higher functioning adults experience worse outcomes in life than other ASD groups. This is because the consequences of having serious difficulties in social interaction and communication are not compensated for, so much as exacerbated by, a higher intellectual ability and normal language development (Mordre et al., 2011).

To date, no single published research study in Australia has attempted to comprehensively profile the lived experiences of a large sample of adults with high functioning ASD across a wide range of life domains. We Belong sought to address this gap by conducting a detailed survey of over 300 adults who have an ASD with no co-occurring intellectual disability, exploring topics such as their health, education, work, social and community activities, and daily life.

 

[1] Intellectual ability has traditionally been defined in accordance with the non-verbal Intelligence Quotient (IQ) scale. An IQ score falling below 70 is considered to reflect a generalised intellectual disability.

[2] Estimate based on ABS Cat. 3201.0 – Population by Age and Sex, Australian States and Territories, June 2010.

So I’m A Little Different – Written by Autism Love

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I found this wonderful blog post written  by Autism Love, a fellow Aspie and Autism parent and a truly gorgeous human being in her own right. I urge you to read  this post and then immerse yourself fully in her blog at http://autismslove.blogspot.com.au/2013/02/so-im-little-different.html

” As a young child, I noticed that I was a little different.  I didn’t act like children my age. As a matter of fact, I had great difficulty understanding peer behavior; that is, what would be considered typical behavior I guess. I much preferred interactions with older people, people that had some semblance of a knowledge base beyond the most current toys on the market, spelling bees and recess. So it should be no surprise that very few children wanted to play with me. I did have three childhood friends. One was much younger than me and soon lost interest as she grew older. Another friend liked me for my ingenious way of pranking her mom and older brother.  My third friend is still friends with me today. She is very accepting of my differences, even if she thinks me a little goofy at times, I don’t think she minds. Most of my peers did not like me or found me odd because my speech was too proper and my posture too straight. I walked on my toes and stared off into the distance too much. I was slow to respond to jokes, if at all and I did not know any childhood games or songs. I much preferred the company of my dolls over the company of humans. To be honest a gobstopper (jawbreaker candy) and a sketch pad were all I needed for my world to be complete.

Bullying was a common occurrence. There was some bullying in kindergarten and grade school, but high school was the worst. Not only was there continuous name calling, but people would set out to befriend me only to get money from me. I wanted to have friends, but did not know how to be friends, not really. I still struggle with that sometimes. It was easier to lie to myself and say I have several friends knowing all they wanted was money. I was glad to give them money and treats from my parent’s store. It made me feel like I was liked for a little while. Yes, I was used and I let them do it, all because I needed to have friends and to be liked.

I have another confession to make. I hate gossip and the very act of gossiping, but I did it for many years, because that was the level of conversation I could engage in and feel like I was being normal. I felt accepted.  It was easier to engage in gossiping about someone else rather than be the one gossiped about. It felt great being liked as opposed to being an outcast. Even if it was all an illusion, the lie perpetuated itself and manifested itself into a truth, but only in my mind. I wasn’t liked…I just engaged in liked behavior.  I had grown so tired of being the odd one. For once, I finally fit in for seemingly no cost, but there was a price and what a price I paid. I lost a potentially good friend and self-respect behind gossip. Gossip is hurtful and it is wrong, and a waste of brain cells. After all was said and done, I found that I too was talked about behind my back by the ones I called friends. If nothing else, I learned when fraternizing with people that talk about others, know that they too are talking about you. I still struggle to understand why this behavior is a norm and perfectly acceptable in society.

I have decided to no longer give into that which is considered “the norm” just to fit in. It’s not worth it. I want to regain myself and be the person that God created me to be. It’s not an easy road. I have learned many things over the years, both good and bad. I now have to figure out how to undo the bad. I am determined to succeed in this. I feel I have no choice as I continue to move forward on this path. I find my need to be my true self stronger than my need for friendship.

It is not my diagnosis of mild Asperger’s Disorder that defines my differences. It is a culmination of many things including a tumultuous childhood which ended at the age of 42. I am now 47 and just starting to discover who I am.

Some say I pressed the mute button on life. I say life also pressed the mute button on me; perhaps life pressed the button first, but that’s another story. I’ll share that with you later. In the meantime, I am happy to be blogging again sharing my thoughts and a few of my experiences with you. Be blessed and stay true to yourselves.  Thank you for reading my blog. And please do share your comments.”

This post was written by Autism Love and shared with her full permission. You can find her wonderful blog at http://autismslove.blogspot.com.au/2013/02/so-im-little-different.html

From this point I’m on I’m going to add the sharing of as many amazing blogs by fellow Autism authors as I can, yet another dimension of  this blog.  So if you have a blog post that you’d like me to share please add your blog post details below and away we’ll go.

Autism Does Not Equal Sterility. Combating the cruelty and ignorance of the words of others.

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My son was returned home to me, pale and extremely subdued, after his weekend visit at his dads on Sunday afternoon.

 

I could tell instantly that something was very wrong, but when I asked him about it he just said that he wanted to go to his room.

 

So he after he’d been in his room for a while I went in to check on him.

 

iamsam3He was crying and watching the movie “I Am Sam” on his computer.

 

The movie “I Am Sam” has always made my son cry.

 

Yet he continuously watches it because just like Sam, he too dreams of becoming a father one day.

 

His desire to become a father and experience the joys of raising a child has always been on the top of my son’s wish list for as long as any of us can remember.

 

Even as a child, he’d continuously express his desire to hold and care for babies.

 

His little hands would always be awkwardly reaching out toward the nearest person smaller than himself.

 

Anyone who truly knows my son also can’t help but know this one very important fact about him.

 

Because of this, I am the first to admit that my son’s relationship to the movie “I Am Sam” is a complicated one.

 

He loves to watch it because although it upsets him, it also fills him with the hope that fatherhood for him need not be an impossible dream but instead can become a reachable reality.

 

He relates to this movie on such a deep level because it is the only movie of its kind that portrays an adult, especially a man with an intellectual disability, as being capable of genuinely caring for others, of having a sexual relationship with another special needs adult, and most importantly, of becoming a loving and devoted father despite his own personal circumstances.

 

i am sam1

 

My son is clearly smart enough to know, that the story line contained within the movie, is not beyond the realm of possibility.

 

For this reason, he fears that one day, when he does become a father, there may be someone out there who will try to legally remove his baby from his care, as was done to Sam, by claiming that his status as an adult with special needs makes him an unfit parent.

 

Usually my son will watch the movie, cry and then come and seek reassurance from me that I will never, ever let anyone take away his baby when he has one.

 

This time however, he wouldn’t come out of his room and talk to me.

 

Despite my best efforts he chose to remain within the solitude of in his room all night.

 

This morning when he woke up, he looked even paler and refused to eat his breakfast.

 

Yet he insisted on going to College, as he’s just met a girl that he really likes and he said that he wanted to be near her.

 

Okay. So we get ready and we’re driving in the car when he suddenly breaks down again.

 

Only this time he’s not just silently crying the way he was in his bedroom the night before.

 

This time he’s physically dissolving into great heaving sobs of sadness as he sits in his seat right beside me.

 

I pull over and take him in my arms and ask him again what’s wrong.

 

It is only then that the awful truth finally comes tumbling, haltingly, out of his mouth and the cruel gravity of what’s been said to him whilst at his father’s house, hits me like a red-hot arrow straight to the heart.

 

408967_10150524201273318_535028317_9097053_1821249456_nOn Sunday, whilst they were alone, his father’s new wife took it upon herself to tell my son that he’d “never ever be able to have children of his own because he has Autism and his genetics are all wrong.”

 

He said she then told him to “stop talking about it because she was tired of hearing it and it’s never going to happen anyway so just get over it.”

 

Her words must have felt like bullets to him.

 

Delivered as they were in such an incredibly cold and cruel (and if I were a lesser person I’d also say a deliberately well calculated) way.

 

The impact they had had on him had quite literally cut into the very core of his being.

 

I kept my own sense of rage in check as I tried to calmly reassure him that ‘her’ words weren’t true.

 

Then I remembered that I had a letter from my son’s geneticist still in my bag from the week before. I grabbed it out and read the last line of it out to him……

 

“As we discussed in our previous visit, I look forward to seeing James again when he decides it’s time  for him to have children as there is no reason why his desire to become a father should not be realized.”

 

Fortunately for us, we had seen the Geneticist in November of last year and James had asked him whether or not he would be able to have children.

 

Though initially taken aback by the question, coming as it was from a 16-year-old with Autism and a chromosome deletion to boot, the geneticist answered my son by telling him that there was no reason why, with due care, he could not have children.

 

He also told him that the best way forward with having children would probably be to look at some form of IVF so that they can check any future embryo’s to see if they are carrying any chromosome deletions before implanting them.

 

The whole issue of IVF took quite a bit of explaining later at home, but I still remember the smile that almost split my son’s face  in two once the penny had dropped and the realization that he could truly become a father without causing any genetic harm to his baby finally hit home to him.

 

I tell you, never have I felt so pleased to have doggedly persisted in chasing down the necessary genetic screening tests for my son and never have I felt so relieved to have fallen down on my self-appointed task of judiciously filing away all of James important documents, as I did today.

 

My son sobbed some more as we sat there in our rain splattered car, then slowly, he lifted his head and warily glanced in the general direction of my face.

 

“You promise me I can have children?” he asked me.

 

‘Yes I promise’ I told him. ‘Look here it is in writing. In good old black and white. And you remember don’t you how happy you were when the geneticist said that you could have children?’

 

He nods and blows his nose. His tears slowly stop falling.

 

“So what she said isn’t true?” He asks one more time.

 

“No it’s not true. This,” I say waving the letter in my hand toward him, “this is true.”

 

“But she’s a nurse. She said she knows about this kind of thing”.

 

‘I don’t care what she is. She’s is wrong.”

 

Finally, as a parent, I had the ability to not only answer my son’s questions but to also defend his truths and validate the personal worth and integrity of his dreams against the erosion of harm and doubt that other people’s words of ignorance had caused him.

 

To prove it I hand him the letter.

 

He looks at it as if he’s reading it but I know there’s no way his vision is clear enough to read such small writing.

 

Never the less, he smiles.

 

Folds it up and asks if he can take it to College with him.

 

Normally I’d say no. Not till I’ve made a copy of it.

 

But today……?

 

Today I say….. Yes.

 

YES!

 

Because if nothing else, he needs a yes after enduring God knows how ever many hours of the cruelty of ignorance he’s forced to endure at his father’s house.

 

And as we all know, ignorance is the curse that those with Autism are far too often forced to deal with every day in our society.

 

The curse that follows you home and invades not just your outer space but your inner space as well. Silently shedding its doubts on all of your personal thoughts, your hopes and your dreams, long after the echoes of the words once spoken have disappeared.

 

Do Parents With Asperger Syndrome Parent Differently?

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An icon illustrating a parent and child

One thing I’ve been wondering a lot lately, is whether or not parents with Asperger’s Syndrome actually  parent any differently to Neuro-typical parents?

It may seem like a bit of a silly thing to even ask but considering that the question so often thrown around within the Autism community these days  is whether or not Neuro-typical parents can understand their non neuro-typical children, it strikes me as  rather odd that nobody’s actually thought to ask parents with AS how they feel about parenting and whether or not they think their own level of Autism (or non neuro-typical status) affects the way they parent or understand their neuro-typical children?

I strongly suspect that there are 2 very good reasons why no one has as yet asked the question:

1)  Because it would be blatantly politically incorrect to do so.

2) Because the answers aren’t cut and dried  in either direction.

I know from my own experiences that at times I’ve felt as if I have a greater affinity with my eldest son than some, but by no means all,  neuro-typical parents of children with autism, that I’ve met.

Given this I’m not at all sure whether  or not my affinity with my son is simply due to the fact that I share in some of his responses and reactions and so can therefore understand them, or whether this sense of affinity arises simply because as a parent, I’ve always tried to put myself in his shoes and view the world through his eyes.

Equally, I  know many fantastic neuro-typical parents who  are also always trying to see things from their child‘s perspective in order to help and better understand them.

Autism Awarness Cause Ribbon of Colorful Puzzl...

And I know that many Neuro-typical parents  feel as deeply connected to their Autism Angels as I do.

So you see,  I can’t say with any degree of certainty, whether or not being an AS parent  has necessarily    made me any more in tune with my son than I would otherwise have been if I weren’t an AS parent.

My daughter, on the other hand, is an entirely different story.

We clash at times as if we are diametrically opposed concepts.

Each heading directly at the other and and each holding no space for  the shades of gray in which other parents and children make their nests of  compromise out of the soft blanketing which enables peace.

Neither my daughter, nor I, are able to hold on to the comfort of intangibles.

Sometimes I think it’s  the fact that we are both  Aspie’s that leads us to being at logger heads with each other.

There simply are no shades of gray on her emotional radar. Ever!

And if I’m honest, on certain subjects, there are no shades of gray on mine either.

So because one of  us must always be right, the other must always be wrong.

But then, on the other hand,  I know that many NT parent’s go through similar stages of being at logger heads with their children, particularly their teenage daughters.

But that at the end of the day (and in the beginning and middle bits too) we parents are all the same. We all love the socks off our children. Teenage girls included.

This makes me wonder whether  our clashes  occur not just because we are so alike, but simply because she’s a teenager and I’m a parent.

In that case, no matter which parental universe  you are looking at it from, teenage girls and mother’s are always bound to be diametrically opposed and explosions are always going to be immanent. Neuro-typical or not.

Six Degrees of Autism: From Discover Magazine

So do I parent differently?

I don’t know.

I would love to hear your thoughts on parenting with AS.

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