Category Archives: children

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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A Childless Mother, Is still A Mother. Though her arms may be empty… her heart never will.

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Mothers Day has always been an incredibly difficult day for me.

Filled as it is with  mixed emotions but not for the reasons you might think.

It’s not a difficult day for me because I have a son with Autism or a daughter on the spectrum.

In many ways their presence here helps to counteract the whirlpool of emotions that this day normally stirs up in me.

Mother’s day is hard for me because I am, or at least I would have been, had everything gone to plan, the mother of seven children.

You see, four of my lovely ones never made it kicking and screaming into the light of this world.

So every Mothers Day I sit and I think about the babies that I never go to hold.

The faces I was never allowed to touch and love.

And I wonder what they would have looked like now as strapping young adults.

I wonder what their personalities would have been like and who they might now have been.

Would they have been artists or writers?

Would they have had that same broad grin that my middle son wears like a badge of honor?

Or those same amazing amber eyes as their sister?

Would they have been as tall as my living eldest son or more on the shorter side of life like me?

I guess it’s normal for mother’s like me to wonder and occasionally let ourselves dwell in the mystical land of ‘what could have been’.

I guess some would even say that I’m still grieving their loss and I yes, in a lot of ways I probably am and always will be.

I know that it has gotten easier with time.

Yet I will always remember that the awfulness,  of breathing my way through  every single Mother’s Day that left me unmarked and unacknowledged as a mother, during those years of enduring loss, were some of the most pain filled days I have ever known.

During those days I often used to wonder what to call myself.

After all what do you call a childless mother?

Common sense would say that there can be no such being as a childless mother and yet, there I was, every single Mothers Day for four years, struck numb by being exactly that  which logic dictated I should not be.

A childless mother.

Despite that I  knew, that even though I was a childless mother, I was still a mother.

Though my arms may have been empty, my heart was always full.

So to all the childless Mothers everywhere, I honor you, I recognize you and I declare with all my heart that;

You are now,

And you will always be,

Mothers,

Worth celebrating.

 

 

 

 

 

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Mum… don’t leave your Facebook logged in on my Ipad……

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My lovely daughter took over my Facebook for a brief period of time today.
If  any of you received any comments that you felt may perhaps  have been a tad bit unusual from me….
Especially those followed by an XOXO……..
Please know that my daughter enjoyed your posts immensely ……
And of course…..
She left me a message of her very own just to remind me never to be so absent-minded again as to leave my Facebook logged in and unattended.
Below is the message she left me.

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This is what I said to my doctors at the asylum ;) xo

P.S I got out 8 weeks ago today :) .
Mum don’t leave your Facebook logged in on my iPad…

Oh and just in case any of you are wondering…..
I have not just escaped from the asylum……
And yes….
My girl does indeed have a wicked sense of humor….

 

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Crappy Parenting is a Spectrum Disorder

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Reblogged from Laughing Through Tears:

Click to visit the original post

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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Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

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A  new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as  gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

“Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however,  I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of  severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of  a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of  us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants,  and  a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period)   is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you,  when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’  approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of  violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made  lightly by the  parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every  individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

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Hairspray, a lighter and a very troubled teenager.Which ever way you look at it, this was always going to be a lethal mix.

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This is what my daughter did tonight in her room with a can of hairspray and a lighter…..

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She could have seriously injured herself of burnt the entire house down.

Worse still, she got her brother to take a photo of her while she was doing it……..

Neither of them seem to have any sense of the danger they were placing themselves and others in……….


Yet my daughters actions tonight are just the latest in a very long list of dangerous behaviors

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I don’t think she has a fascination for fire per se. 

As this is the first time that she’s pulled such a stunt.

Well that I know of anyway.

I think instead,  that her actions tonight were simply yet another attempt at trying a new way of behaving destructively, on for size.

I say this because after the whole fiery incident tonight she tried to sneak a whole packet of Panadol out of the kitchen.

When I asked her what she thought she was going to do with them, she  told me that she was going to take them all.

I tried to wrestle them out of her hand before she could leave the room with them,  but she got away.

So I chased her up the stairs and told her that over dosing on Panadol was one of the worst ways any body could possibly choose to die.

That people linger on for months in agony while their livers slowly break down inside their bodies.

As cruel as it might sound, this form of logic worked  on her and she handed the Panadol back to me.

Then locked herself in her bedroom again.

I am extremely worried for my daughter’s safety and have been for many months now.

We’ve been to see professional after professional but none of them have been of any help.

She’s booked in to see her latest psychologist next week.

But bugger that for a joke.

I’m going to be ringing him first thing in the morning to tell him that he needs to take action now.

No child or parent should have to keep living this way simply because they’ve been shoved at the end of yet another waiting list.

So while the politicians wax on about how they’re going to solve the  crisis in health care in Australia !!!!!

We’re the ones who have to live with it on a daily basis.

 

So why all the animals ?????? This post is in honor of my middle son…… I really do see you my lovely young one.

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I rarely write about my middle child.

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My youngest son who  so willingly engages,67935_541838245867555_1087220439_n Within in his own silent and peaceful universe.

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The universe he’s created to escape the lack of attention he receives  from me when ever I’m busy dealing with either the needs of my eldest son or the melt downs of my youngest daughter.

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I know sometimes he thinks that I forget to see to him.

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That I forget to listen to, or hear him.

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Or that I forget to think of him and his needs amidst the daily jungle of our lives.

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I’d like to say that he’s perspectives are neither accurate nor true,

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But,

11744_548751435176236_736055841_nIf I’m honest,

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I know that sometimes he’s right.

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So in order to show him that I do see him,

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That I do listen to him and think about him,

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His interests and his needs,

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I’ll often search the internet for amazing wildlife photos of the animals  I know he loves and adores.

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He is a child of nature.

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And he loves all creatures big and small.

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This is his way of coping.

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And I love taking the time to  see, appreciate and understand the sense of wonder that still exists within his precious soul.

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So this post is for you my lovely young lion.521850_543994382318608_1741177800_n

And this is your mother’s way of saying she’s watching over and loving  you just as much too <3

 

Special Needs Moms – A Look Inside – by April Vernon

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Okay….. So today lets look at the positives of parenting a special needs child…….

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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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Please Don't Hate Me

I received   a comment to my post /parental-rights-and-autism-a-much-needed-reality-check/  a while back that I’ve left in my pending tray for quite some time.

I left it there mainly because I couldn’t understand the logic involved in the arguments the commenter applied.

Yet I did not want to dismiss it  out of hand without first giving it due consideration.

In the post I’d previously written, I’d argued that no one should have the right to tell parents of children with Autism to either “shut up” or to treat them as if they had nothing what so ever of value to offer to the Autism community.

Within my article I openly acknowledged that adults with autism have every right to express their own views regarding the childhoods they had lived through first hand, and that due to this they did indeed have a large degree of expertise to offer as to what should count as appropriate ways of treating children with Autism.

To me, acknowledging the wisdom and advice that adults on the spectrum can provide to parents is an absolute must if we are ever truly to become a cohesive Autism Community.

Yet despite making several valid statements as to both why and how parents of Autistic children and Adults with Autism should work with each other instead of against each other, the comment I received form a person who neither identified themselves as either a parent or an Adult with Autism really bugged me.

So I decided to try and break it down to figure out why it bugged me.

This is how the response started;

“While I acknowledge that many parents have fought the good fight– and continue to do so– on behalf of their autistic children, it is also sadly true that many autistic children suffer a great deal at the hands of their parents. Some of that suffering is due to societal problems, and some of it is due to neurotypical parents misunderstanding or being unaware of their autistic child’s needs.”

Ummmm….. I’m sorry but I simply do not believe that children with Autism are suffering from having “misunderstanding” parents.

If anything parents of children with Autism are often later found to be somewhere on the Autism Spectrum themselves, so I’m not sure where all of these ideas about  ‘misunderstanding neurotypical parents’ are actually coming from.

More importantly, neurotypical or not, I do not know one single Autism parent who has not worked their asses off firstly in seeking help for their child, and then secondly reading everything and anything they can get their hands on that might provide them with some kind of insight as to how to better help and understand their child.

So once again, where are all of these ‘misunderstanding neurotypical’ parents coming from and where’s the data to back such claims up?

Then the commenter does a backflip in acknowledging that there are several wonderful Autism parents out there and even takes the time to point out who they are.

But if you look closely at the following paragraph, you will find that those parents who have been singled out as praise worthy are  parents that fit a certain kind of criteria.

“There are plenty of wonderful parents out there, like this one: http://emmashopebook.com/2013/04/04/what-i-wish-id-been-made-aware-of-when-my-daughter-was-diagnosed-with-autism/. I am deeply grateful to the parents who are willing to stand up to society for their children’s rights. I applaud parents who refuse to believe the experts who tell them that their child cannot learn, or that those children should be forced to endure things they find traumatic for the sake of looking normal (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), or that the caregiver is always right (http://ballastexistenz.wordpress.com/2012/04/30/badd-caregiver-abuse-takes-many-forms/).”

So under these proviso’s, if you are a parent who listens too, seeks help from or agrees with experts on any level, then you are not doing your jobs right.

Right?

Ah no and here’s why.

There’s a big “but” involved in this line of logic that is far too often overlooked.

Basically if we, as parents, were to all ignore  “the experts” then our children would never have been diagnosed in the first place because in theory, we should all have refused to agree with an “experts” diagnosis of our children as having Autism.

Seriously I am so tired of the constant catch 22 that some within the Autism Community continue to use against parents in this way.

This circular form of thinking places parents in a no win situation.

We’re either damned as fools if we do listen to “ experts” or damned as neglectful, harmful or abusive ‘neurotypicals’ who haven’t bothered to take the time to find out the facts, if we don’t.

A part from all of that, hidden within that paragraph is this message “I applaud parents who refuse to believe……. that the caregiver is always right” .

Now this meaning may not have been the commenters initial intent, but what if it was?

Why on earth should parents be told to promote the idea that they, as caregivers are not “always right”.

That they don’t always know what’s best for their children and that they don’t always dedicate themselves, everyday, to understanding and honoring  their children’s human rights.

I’m sorry, but to me, this continuous misnomer that for Autism parents honoring their children’s rights comes somewhere way down the list of whatever mysterious parenting agenda, those of us who do not fit the perfect Autism parenting criteria, are supposed to have, simply just is not true.

If it were true there would simply be no Autism Community at all.

Who do you think started it?

Parents did. That’s who.

As I stated in my original post.

“In truth, the biggest contributing factor toward the significant rise in Autism awareness over the last 5 decades has not come from adults with high functioning autism, nor from any magnanimous sharing of Autism facts by professionals,  rather it has come from the hard-fought efforts of parents of children with Autism to unite and share information with one another.”

In my article I outlined how one father Bernard Rimland single-handedly, took on the many prejudiced and erroneous assumptions surrounding the causes of Autism back in the 60’s and that  in doing so, he advocated for an end to the barbaric treatments that children with Autism were being subjected to.

In fact, if it weren’t for the work of parents like Bernard Rimland , whose book Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior marked a turning point in our present day understandings of Autism as a neurological disorder/processing difference, then many of the new wave of adults with high functioning autism who are now so clearly and eloquently speaking for themselves, may have instead endured years of pointless and often cruel psychotherapy and psychoanalysis.

So really, there is very little basis for the argument that in order to be a good Autism parent you must first admit that you don’t know everything about your child.

Despite these facts, the commenter then goes on to say.

“Unfortunately, there are a lot of parents out there I wish would shut up. These parents throw pity parties for themselves and tell the world about what a burden their child is (parents who are autism allies, on the other hand, talk about the difficulties they encounter in raising their kid, sure, but in a way that’s respectful, that won’t destroy that child’s self-esteem if/when they read those articles online later in life). Parents who need to shut up are the ones who derail conversations about the abuse and murder of autistic people (kids or adults) with arguments that it’s sometimes justified, or take those discussions invariably as unwarranted personal attacks on all autism parents. Or parents who refuse to believe their child is intelligent just because they don’t speak, even when they show that intelligence in many other ways.”

I’m sorry but I simply do not know any parents who have murdered their Autistic child. Nor do I know of any who would call such a heinous act justified.

Nor do I know of any who speak of their children as “burdens”.

The concept of the “burden of care” was invented by doctors and psychologists in an effort to try and pathologize parents of special needs children as being either emotionally unstable or possessing a depressive personality type.

In reality it was nothing short of being another attempt by the medical establishment of blaming special needs on parents.

It was not a term invented by parents, nor is a term used by parents.

In general I find that if a parent takes offence to a statement regarding the “lack of understanding displayed by parents  of children with Autism,” it is usually warranted due to the manner in which some choose to express themselves.

Further to this, no parents that I know of refuses to believe in either the worth of the potential of their child.

I mean really, just think about it.

If it really were the case, that we as parents have given up on children, or are refusing to believe in their intelligence, then we’d all be putting our feet up, instead of madly scurrying to and fro to fit in speech, occupational and physio therapy sessions.

The care industry would fall into complete chaos and therapists everywhere would be out of their jobs. But oddly enough they’re not!!!!

The commenter then goes on to say;

“Yes, I worry about taking parental rights away from autism parents… but mostly because that would mean giving those rights to someone even worse.”

Really, according to you, who could be worse than some of us parents?

This comment is followed by the claim:

“I do wish parents were required to take some classes designed/taught by adults on the spectrum in order to better understand their children’s needs.”

Okay, hands up all of you parents out there who have ever gone to workshops, or attended events with speakers who are Adults with Autism?

Voluntarily. Without being told too.

Well I for one have attended many such workshops and events without being told too and I did so because I wanted to learn more about the experience of Autism in order to best help my child.

I can also tell you that every workshop and event I’ve been to has been filled with other parents who are all there for the very same reason.

They want to better understand their child.

As if that weren’t enough, the commenter then ends their response with the observation:

“I often find that people on the spectrum are treated best by people who have been taught the least about autism– because they don’t approach that individual with a mind full of misinformation, pity, and stigma.”

I’m sorry but hasn’t the commenter just spent their entire post stating that we need to better understand Autism?

How on earth can they then turn around and make the claim that placing anyone with Autism with someone who has an uninformed mind would be better than being surrounded by people who love and care for them and who are trying desperately to understand them?

You’ll have to excuse me but when it comes to this kind of argument, I’m completely lost.

How about you?

 

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You find yourself at the center of a huge debate. You’re the new black, the hot topic, part of a growing epidemic, an oft-cited statistic that grows at alarming rates or not at all, depending on who is doing the reporting. You’re living the thing most families fear. You’re the brave one, the resilient one, the courageous one, the one doing something she or he (but mostly she…

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This is brilliant..... Autism Parenting 101
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