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.

Beyond Human

Artwork by Patrice Muricano

Artwork by Patrice Muricano

There is a sense of  longing,

Which envelopes me,

On a regular basis.

It’s more than just,

The longing,

To be accepted.

It runs,

So much,

Deeper,

Than that.

It is the longing to be understood.

To be so completely and utterly known,

By the mind of another,

That no word,

Should ever,

Again,

Be,

Required,

To,

Explain,

Who I am,

How I am,

Or,

What,

I,

Am,

Beyond,

Human.

Different on the Inside. By Susan Golubock

Artwork by Tran Nguyen

Artwork by Tran Nguyen

“To look at us,

You and I appear very much the same.

Yet I have learned that we experience life,

And therefore view our experiences,

Very differently.

I have learned that I just don’t think like you,

No matter how hard I try,

And believe me I have.

My nervous system seems to be,

Configured differently.

I’ve learned to do,

What you do,

At least the mechanics of it,

But I don’t understand,

Why you do it.

I’ve memorized the words you use,

And can repeat them fluently.

Figuring out what you mean,

And why you say them,

Is the hard part.

I process words literally,

Concretely,

And naively,

Which often leaves me baffled,

And confused.

I thought that by pretending,

To BE you,

I would someday,

Understand you.

But I don’t.

Any more than you understand me.

There are times when I join in,

With you,

And truly enjoy,

Interacting with you,

But I rarely feel that I belong.

I can focus on you,

Or I can focus on me,

But understanding the complexity,

Of relationships,

Is very much beyond me.

There are times when I can connect,

With my feelings or yours,

But never both,

At the same time.

And some emotions not at all.

There are times when,

I really think,

I understand you,

Then you change,

And I don’t.

And even though,

I have stopped,

Trying,

To BE like you,

I haven’t stopped,

Trying,

To understand you.

It would mean a lot to me,

If you would try,

Just for a little while,

To understand,

What it must be like,

To be ME.”

This is an abstract from the poem “Different on the Inside” by Susan Golubock.

23 Things you can take for granted if you happen to be Neuro -Typical with Neuro-Typical children

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1. You can, if you wish, arrange to be in the company of people who share your own “neuro-typical status” most of the time.

 

2. If  you should need to move, you can be pretty sure of renting or purchasing housing in an area, that you can afford and in which you would want to live.

 

3. You can be pretty sure that your neighbors in such a location will be neutral or pleasant toward you.

 

4. You can go shopping alone most of the time,  and be pretty well assured that you will not be followed or harassed.

 

5. You can turn on the television or open to the front page of the paper and see people of your own “neuro- typical status” widely represented (in positive ways).

 

6. When you were told about your national heritage or about “civilization,” you were shown that people of your ilk made it what it is.

 

7. You can be sure that your children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. You can arrange to protect your children most of the time from people who might not like them.

 

9. Whether you use checks, credit cards or cash, you can count on your “neuro-typical behaviour” not to work against the appearance of your financial reliability.

 

10. You can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. You can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, or the inadequacies of  “having a non-neuro- typical status”.

 

12. You can speak in public to a powerful group without putting your “neurological status” on trial.

 

13. You can do well in a challenging situation without being called a credit to your “neuro-typical” class.

 

14. You will never be asked to speak on behalf of all the people in your “neuro- typical” group, everywhere.

 

15. You can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. You can criticize your government and talk about how much you fear its policies and behavior without being seen as an outsider.

 

17. You can be pretty sure that if you ask to talk to “the person in charge,” you will be facing a person of your own “neuro-typical status”

.

18. You can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of your own “neuro-typical status”.

 

19. You can go home from most meetings of organizations you belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of your “neurological status”.

 

21. You can choose public accommodation without fearing that people of your “neurological status” will be mistreated in the place you have chosen.

 

22. You can be sure that if you need legal or medical help your “neurological status” will not work against you.

 

23. If your day, week or year is going badly, you need not ask of each negative episode or situation you’ve encountered, whether it holds “discriminatory” overtones.

Artwork by Sam Drawing

Artwork by Sam Drawing

These are just a few examples of the common everyday things that those of us  who experience Autism, Developmental delays, Brain Injuries, Chromosomal additions or deletions, or who are neurologically different, in any way,  can never  take for granted in our daily lives.

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So the next time you see someone struggling to do that which for you has now become so easy that  it’s taken for granted, take a few seconds before you cast judgement and ask what you can do to help, rather than  hinder, that person’s situation.

Art by Maria Zeldis

Art by Maria Zeldis

A little bit of kindness goes a long, long way but a little bit of understanding goes even further.

Art work by Kate Hannah

Art work by Kate Hannah

List originally compiled using the resources of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, and adapted by me to include and consider the ramifications of the taken for granted actions of those who do not experience any degree of neurological difference.

 

“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

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“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

Rising to meet the challenges of understanding ourselves as Autistics in a non-autistic world.

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A major challenge that is presented  to many Autists in today’s society is choosing just where it is they wish to stand within the Autism spectrum.

I can proudly claim my right to be an Aspie and not see this as a disability, or  feel the need to change at all to fit into a non-aspergic world.

I can meet with others over the Internet, find a job where I don’t have to socialize with others, and indulge my favorite obsessions without messing anyone else’s life around.

At the other extreme, I can humbly acknowledge my crushing disability, and make extreme efforts to learn compensatory strategies that will help me become as “normal” as possible to fit in with everyone else.

Neither of these extremes suit me, and I’ve taken a middle position on the spectrum, which makes sense considering that I have a spectrum disorder!

I’m not sure whether or not having  Autism is something that I should bother to analyze rationally by seeking a legally framed story of cause and effect to explain it away, or whether it’s just one of the unavoidable hammer-blows of fate?

Or even, perhaps, as some see it, a challenge from the gods, designed to shift me into a different mode of functioning?

I guess in a lot of ways, the difficulty of rising to meet the challenges of understanding ourselves, is no different for us auties and Aspies than it is for the “normal ones” .

The normals still have the luxury (or obstacle?) of being able to hold on to their comforting views of the world, of themselves, of the purpose of life: whereas we are foreigners in a strange world in which we are reminded a hundred times a day that we are visitors to this strange place.

But, could that become a strength?

We may be able to think outside the square – let’s face it, we have little choice, since the square may now be closed to us. My need for literal and straight communication meant I had to be skeptical about anything anyone said to me, go back to first principles and seek truth with logic – an unpopular quest in a social milieu where the admission ticket consists of already knowing and accepting the consensus view, however illogical or untruthful it may be.

Can we, whom the gods have chosen to bless with this challenge, make any positive sense of being on the autism spectrum, and painfully carve out a new direction? Was it a divine intervention to force us to learn a very different way of being to the way of most on this planet? Is it all karma for actions we perpetrated in a past life? Can we learn from our dire experiences some new compassion for the suffering many?


I haven’t yet completed the long process of making sense of it all, and it will probably take me some years.

But I have found that it helps to keep myself open to the possibility that I needed to learn something, probably many things, from the many unpleasant things that happened over the years – bullying, taunts at school, abusive father, social alienation, constant sacking from jobs to name a few. I hope to gain insights that will make me a better person in a spiritual sense, perhaps that the direction I had been headed in during my recent incarnations was in need of change, and that I needed to take on board some painful humility about the common suffering of humanity which will help me become a more giving, forgiving and compassionate person in the end.

Strategies for helping those with Asperger’s Syndrome/Autism deal with negative people on line.

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Encounters with negative people can be emotionally draining and stressful regardless of the kinds of forums in which negative encounters take place.

The phenomenon of people having difficulty dealing with negative people or comments on-line is on the rise.

It is becoming especially troubling for those people who are generally already classified as vulnerable, open to abuse or misunderstanding, yet who are regardless still striving to interact within a variety of social groups, forums and friends (Facebook friends and groups) on-line.

For people with Asperger’s Syndrome being deliberately baited or put down by others on-line can be debilitating.

Often the consequences of being the victim of negative on-line communications can leave those who are already vulnerable, socially isolated or are already struggling to legitimately understand social interactions, tangled in a web of words that erodes their already fragile ability to trust and understand others.

For those who are vulnerable on-line, developing an understanding of how to deal with negative people can be an essential key to their continued ability to reach out to others without feeling either belittled or betrayed by thoughtlessness or off-putting comments.

In order to develop better strategies for identifying  negative people on-line and discerning when it’s time to block, unfriend and walk away, a basic understanding of human behavior is required.

In many instances, negative people will find something wrong with any comment, question or statement you post.

These people are expert complainers, cynics and on-line tyrants.

As such you may find that even the most innocent post can become fair game for those who wish to belittle you.

Their negative response does not mean that you have written or said anything wrong, rather instead it is a reflection of the fact that negative people simply want to spread their negativity as fast as they can.

In order to understand why some people seem to behave so negatively it is appropriate to take a quick look at some basic forms of NT human behavior.

Basic NT Human Behavior.

Everything NT’s do and say in their lives is shaped by their particular life experience.

NT’s learn from a very early age that certain behaviors produce certain results.

For example, if they are hungry and they cry, someone will give them food.

If they throw a tantrum, someone will pay attention to them and ask what is wrong.

If they throw a big enough tantrum, people will leave them alone.

These learned behaviors stay with them throughout their lives.

At this point I think it’s really important to state that people who are not neuro-typical (NT) do not learn life’s lessons in the same ways that NT’s do and so therefore do not expect nor seek the same responses from their actions, as their actions are being derived from a completely different place.

How the lines of confusion arise

As adults we are all, regardless of neurological wiring, expected to repress our feelings of discomfort (or stress) and behave in a more civilized manner when communicating with others.

Many of us are trying to do just this.

However, expressing ourselves in a more socially acceptable way takes advanced communication skills, and sometimes people with Asperger’s Syndrome or Autism haven’t developed those advanced skills as fully or as manipulatively as NT’s have.

Consequently, this leaves those of us who are non neuro-typical open to attacks or experiences of invalidation when participating in on-line forums or groups.

This is especially true for those of us who are still learning social cues and the norms of social interactions.

It is therefore little wonder that many of us may have difficulties in discerning which negative comments are meant to be deliberately invalidating and which comments may simply be another persons open and honest statement of disagreement.

The inability to discern these differences often exposes us to further attacks.

So what can you do when faced with someone whose comments are consistently negative yet you’re not sure why?

Chances are, when faced with negative comments from others you may find yourself reacting in one of the following ways:

1. Simply withdrawing from the on-line conversation.

2. Depending on whether or not you believe yourself to be in the right, standing your ground (even to the point where you may risk inadvertently offending others). In which case, 9 times out of 10 you are probably being baited, which means the commenter is deliberately trying to upset you so that you will respond to them.

Whilst these responses may at times be valid, discerning what the intentions of the commenter may be and therefore when to apply each response, and with what degree of ferocity to do so, remains a key problem.

Strategies for Dealing with the Comments of Negative People

A more successful outcome for those whose first response to a negative comment is to either withdraw from the conversation completely, or jump in boots and all, may be to ask the negative commenter exactly what they mean by their comment.

If they are willing to further refine their perspective it may make it more obvious whether or not their words were aimed at causing offense or were simply too clumsily put together for literally minded people to be able to accurately understand them.

Responding in this way allows 4 key things to happen.

It enables you to remain within the conversation, discussion or forum without feeling the immediate need to either withdraw or defend your position.

It provides you with the ability to question the commenter thus putting the onus to defend the comment back on them.

It allows the commenter the opportunity to either rephrase or explain the meaning of their comment more fully.

Finally it enables others who may not have initially found the comment to be negative or offensive to re-evaluate both the comment and the person making it.

Either way, by questioning the commenter, you have neither left the conversation or felt forced to defend your own response without first having the benefit of further clarification.

In this way developing an awareness of how you most commonly deal with negative people and comments may help you better deal with them.

In many instances maintaining an awareness of your own behavior can enable you to choose to act in a manner that may prevent an encounter with a negative person from escalating.

Making the choice not to communicate in an unproductive way removes the likelihood that you will be replaying the conversation in your head for days or thinking of all the zingers you wish you’d said!

For any Aspie that’s a bonus.