Autism – What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

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People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.

Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.

If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.

Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.

A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.

Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.

But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.

And that’s okay.

But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic,  into their daily lives and move on.

At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.

I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.

Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.

It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.

That it’s okay to be different.

And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.

I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.

So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?

Well, for one thing, it is likely to allow many women to make sense of their pasts.

To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.

So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.

In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.

But what it will do, is benefit your children, and your children’s children.

And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.

The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.

This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.

If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.

So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.

Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.

I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.

Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.

I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.

Autism – Is it really our duty to educate you?

Artwork by San Base

Many within the Autism community seem to feel that we have a duty to help educate ‘professionals’ by exposing our own personal experiences of Autism to them with in Autism specific forums.

Personally I’m not at all sure that I agree with this premise, as it all too often holds the potential to place  those of us with Autism,  in the unenviable  positions of feeling over exposed.

Which for many, can also amount to making us feel vulnerable.

The belief that it’s up to any one particular minority group to educate the wider community in order to create the understanding that they have the right to be treated as equals, is an issue that many other minority groups have faced.

And just like those within the Autism Community, many other minority groups have also had to cut their teeth on the harsh reality that not everyone who’s interested in you, is genuinely trying to help or understand you.

For example, back in the late 70’s, early 80’s, a male a researcher who was interested in researching gay males, pretended to be a gay man himself in order to win their trust,  and acted as “lookout” for them in bathrooms and public venues, whilst at the same time recording details of their interactions with each other.

He  then began following them back to their cars, taking down their number plates and with the help of a friend in the DMV, used that additional information to track down their real names and addresses so that he could turn up at the homes of these men, some of whom were married, and proceeded to blackmail them in order to gain more personal information about their lives, habits and preferences, all in the name of  his “groundbreaking” new research.

Since then, it has been widely recognized by governing bodies, that lying, deceiving or in any way attempting to befriend or pretend to be a member of a minority group in order to attain personal information, is not just morally and ethically wrong but also potentially emotionally, psychologically and in some instances, even physically harmful.

Yet despite this, there are still members within the Autism Community who seek to enable and even justify the actions of professionals who routinely intrude upon the privacy of those within our community, by saying that ‘we as Autist’s need to teach professionals the truth about Autism’.

Yet I believe it is wrong for everyone within the Autism Community to constantly be made to feel as if it’s up to “us”  to teach those who are often in positions of power over us, the truth of Autism via the revelations, either intentional or otherwise, of our own personal experiences.

This belief presents many within the Autism Community with a false sense of security because it implies that all ‘professionals’ are trustworthy individuals who are  not only capable of viewing and understanding individuals with Autism as they wish to be viewed and understood, but are also willing to fly in the face of past theoretical frameworks, in order to genuinely present new research.

Yet, the truth is, those of us within the Autism Community, have no way of knowing for sure, whether or not said ‘professionals’ are intending to do either of these things.

Time and time again, it has been shown that those researching Autism often can and do, come up with new twists on the same old theories that many of us have found to be repugnant, simply in order to make a name for themselves.

Whenever such instances occur, we feel betrayed, lied too and let down.

And it is only after the fact that we realize all too late, that we’ve either misinterpreted their ‘professionals’ interest in us, or understand that they’ve misrepresented their intentions towards us in the first place.

Which ever way it goes, it’s always left to those of us who are not too afraid, or who have not been made to feel too vulnerable, to speak out.

Many of us lose friends along the way in doing so, as it can be difficult for others to understand exactly why and how another person may feel betrayed by participating openly within what they had assumed to be an Autism only group.

So insidious has the automatic acceptance of the “right” of ‘well meaning professionals’ to lurk within our groups for the purposes of ‘educating themselves’ become, that many no longer question it.

Yet I don’t believe that research ‘professionals’ have anymore  “rights” to interact with ASD specific groups than a gynecologist  would automatically retain the ‘right’ to interact within feminist groups, simply because they contain women who may discuss their private anatomy.

I think it’s time we took on board the lessons that have already been learned regarding the pitfalls of allowing professionals to engage with us so easily and without restrictions of any kind at all, on the internet.

I think it’s time we stopped thinking about Autism in terms of our perceived duty to try to educate our way into acceptance and equality and instead focused on protecting the “rights” of those within our community to feel safe, to remain free from harm and to not be taken advantage of by others when participating in online ASD groups.

We, as a community, need to keep in mind, that not everyone with Autism is either fully informed of the participation of ‘professionals’ within ASD groups, nor aware of the potential consequences of sharing highly personal information within such groups, should anyone within them hold any alterior motives for doing so.

Wouldn’t it be far easier for those who wish to engage with ‘professionals’ on the internet in order to ‘teach them the truth about Autism’,  to actually do so in groups that are openly and specifically  designed for that purpose?

Rather than allowing ‘professionals’ access to any and all ASD groups without question?

Wouldn’t it be easier, if we as a community, made a stand and decided that ASD specific groups should remain exactly that, ASD specific.

Just a thought.

 

Artwork by San Base