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.

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

  1. Good article. 🙂

    I’m not a woman (hold your fire!) but I was diagnosed with Asperger’s at the end of 2013 after many years of feeling like an alien and not understanding why. My diagnosis may have come too late for my liking but in many ways, I fear I may not have understood what it meant if my ASD had been caught when I was younger.

    The best thing my diagnosis has given me is a pathway to answers for many years of questions about myself; so much of my behaviour, my anxieties and other issues have been revealed to be ASD related that it has put so much into perspective for both me and my family. We may not know WHY this is happening but we know what is behind it, which is as good a start as any.

    I’ve already attended some support groups to meet others with ASD and learn about the things we share or differ in, the biggest comfort being that we are not alone. There’s still a long way to go but at least it is a step in the right direction. I do however wonder if anything will change for the better since I have been on this planet longer than I care to admit to, and have achieved little in that time, but fate is an unpredictable master (or mistress).

    Next week I am attending a seminar with 25 clinicians and psychologists and I am expected to speak to them for 15 minutes on my diagnosis. Considering public speaking is one of my biggest weaknesses, this could be a disaster of epic proportions! Suffice to say I am not looking forward to it as I once was now. :-\

    Anyway thanks for sharing these interesting and informative articles with us! 🙂

  2. Reblogged this on Sonnolenta… A Neurodivergent Journey and commented:
    Another eloquent post from SeventhVoice, which is one of my favorite blogs right now. I was diagnosed when I was 41, and my main reason to push for a diagnosis was that I hoped it would help make sense of years of tense family relations, which became even more pronounced after my Father’s suicide.

    When I read this section of SV’s post, it put perfectly into words- how I felt about diagnosis a few years ago: “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.”

    Unfortunately, my diagnosis did nothing to help ease familial tensions. My Mother brushed it off, telling me that she had Autistic boys in her elementary school class (she was a teacher for a few years in the early 70’s) and that I was nothing like them. That was that, end of discussion. Within six months, family relations degraded so badly, that my Mother resorted to badmouthing me to my Son who was then 9 years old- telling him sordid lies about me, and even calling the police because I was late in picking him up from her house. I ended up very late, due to trying to be a support to a friend who had just received frightening health news after a visit to the Mayo clinic, and told her I would pick him up very early in the morning the next day, as he was already sleeping by the time I could have picked him up that evening. The next morning, I picked up a frightened and shaky child, and she screamed at me to get the hell out of her house and never come back. That was January 6, 2012. I haven’t seen her since, and three months after that unfortunate event, my Son and I moved four hours away, to start a new life, in a new area.

    I sometimes wonder if my Mother has ever read my blog, but I doubt that she has. If she has, I can only hope that she’s learned something about adult female autism, and just how much my life and experiences echoes the voices of thousands of Autistic women just like me. The more I read of other women’s experiences, the more at ease I feel about my diagnosis and progress… but the more angry I get at how unfair it is that so many late diagnosed Autistic women like myself have had to endure a lifetime of never fitting in with our families, and feeling like we were always to blame, and that WE were the ones who had to change. And even if we did try to change, it was never enough. We’d always be considered to be inadequate, broken people. It doesn’t have to be like this. It shouldn’t be. I keep writing, I keep sharing, and I keep hoping… that perhaps my words will make the difference in some way, by connecting dots that so badly need to be connected.

    1. Thank you so much for the reblog Sonnolenta and for sharing your experiences. Your words do make a difference. I think that we both write with the aim of making sense, not only of our own lives, but also with the desire to help others to make sense of their lives as well. I too am angry and frustrated by the way in which Autistic Women have been, and in many instances still are being, treated like poor second class citizens when compared to their Autistic male counterparts. I’m tired of the way we are always being blamed for our differences, whilst at the same time, being denied the right to authentically claim those differences as Autism, due to the narrow minded thinking that for so long, has determined who should and shouldn’t be, considered as Autistic. Autistic Women matter and we have the right to voice our concerns, our experiences and opinions. So please keep speaking up as I truly admire your words.

      1. I’m sorry you’ve had to go through so much pain with your family, that kind of treatment stays with us even when the rest of our life moves forward. I did want to ask though if you’d considered the possibility that your mother is also ASD? It might explain her seemingly irrational behaviour towards you. We all react differently when we can’t cope and her reactions come across as an inability to cope. xx

  3. great article …. if more women come forward to be diagnosed it will help to challenge the male stereotype of aspergers and start to build public awareness that women are affected aswell. Diagnosis isn’t completely necessary as actually even if you do receive a diagnosis there is no help to get to come with it. I was just given a piece of paper with the National Autistic Website on it and told to get on with it. However, diagnosis gives you an understanding of why things have been difficult if they have been, and a stepping stone towards moving forward into the future

    1. That’s exactly right Ewok1. The more women come forward and are diagnosed, the harder it is for the powers that be to deny that Autism is not, as has been previously thought, a male only experience.

  4. While the title implied gender neutrality the article yeems to be only about females. But I do agree on the points made. I’d say they also hold true for males on spectrum. I am a bit concerned how these days many parents and professionals seem to use the diagnosis to further confuse and shame us. I really would not want to be an ABA kid. It’s on us grown-ups to do battle there.

  5. I agree completely! Having a diagnoses as an adult allows me to finally make sense of why i felt so different at school. It also helps my family to understand that i cannot help the why i am. Thanks for writing this x

  6. Exactly. I was diagnosed at 51, and my daughter about the same time at 24. We were very happy about it. As a woman, so much in my life to started to make sense and that is a huge relief. I highly recommend a formal diagnosis even if it’s later in life.

    1. I am a 44 year old mother of three. My 12 yo son was diagnosed with ASD less than a year ago. Since learning about ASD, I have come to realize I have quite a few family members who most likely have it, including myself. I’ve been able to manage apparently. But my main concern is for my 17 yo daughter whom I believe has ASD as well. I had her tested twice and they said no ASD. She’s very good at faking it in public. I wish they could see her freak out when she has to make a minor change to her plans. They said she just has social anxiety. I believe she has ASD, but will never get the help she needs without the diagnosis. And since two professionals told us no, my husband will not support me in seeking further diagnosis. Why should I know better than the professionals? I am angry and confused about what to do. Why should my daughter be denied the services that my son is entitled to receive? And also, he gets treated more gently because of his diagnosis and my daughter does not have this advantage. What to do….

  7. I am 68. The value for me was in not having a bunch of things “wrong with me”, I had a single diagnosis of Aspergers. It is amazing how much that changed my life. The value for me was that I no longer had to be in the closet. I could stop hiding who I am. This blog and the Aspergers community has helped me, and has allowed me to help others.

  8. Thank you so much for this post. I was self diagnosed last year as an Aspie and it was the most wonderful thing that has ever happened. Finally my whole life is starting to make sense. The sense of sheer relief and self understanding was overwhelming. I have however been very undecided about seeking a formal diagnosis. Your arguments for diagnosis really touched a nerve and have encouraged me to move forward. I have 2 daughters who I am certain are also beautiful Aspien girls and it will be for them that I fight for formal diagnosis. It’s a scary step because so many professionals are clueless when it comes to females on the spectrum so finding the right professional I think is very important. ( I’m also very anxious about being laughed at or brushed off by a doctor) That’s the stage I’m up to at the moment. If any one has any suggestions I would be most greatful.

    1. We seem to be a lot of the same mind, lushmama. I’m 77, and like a lightning bolt out of the blue about ten years ago, I realized I was on the spectrum At that time my two grown sons were both diagnosed, after the older one researched on the internet and found some answers for himself, then was diagnosed first. While taking part in these two diagnoses, contributing whatever I could of what they were like when they were children, I realized that we were talking about ME, too! (Later, I realized my father was most likely autistic too.)

      “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.” YES! That’s exactly how it is for me.

      I have so far seen no reason to be formally diagnosed myself, since I have no factors at this point that need influencing, but after reading this article, I’m mulling the idea. The nationally known Amen Clinic is situated right here in my town, so I do have a reputable place to be taken seriously. I’m definitely going to give it more thought. Just my opinion, I do think you should consider it especially for your daughters’ sake. (If you find that a doctor is clueless, don’t take it personally–just find one who isn’t.) Maybe if you had your girls tested first, then you’d have a more sympathetic ear for your own situation?

      I would love to be in touch with you–my email address is jbalmer@aol.com. Write me if you’d like.
      Joy

  9. I’m going to be assessed for Aspergers later this year, at the age of 45. Of course I’m hoping this will help me to understand myself, and my family and friends to understand me, but I will be only too happy if it also helps other women and girls in some way, too. I don’t have daughters myself, but 2 sons and also 3 nieces, one of whom is diagnosed with PDAS. Perhaps a diagnosis for me will in some way benefit her.

  10. I was diagnosed at 40. While it has helped me to make sense of my life and the way I am, It hasn’t helped as much as I had hoped with my personal relationships. I’m still expected to be a fully functioning, multi-tasking, socialising soccer Mum, despite my anxiety disorder and impairments with executive functioning. My Mum understands, but my Dad just thinks it’s all a load of baloney, “Didn’t exist in my day” kind of thing. Plus, there doesn’t really seem to be any further support where I live. You’re just told you have it and that’s it. Sigh. I really hope the current generations of girls (and boys)are getting the support they need.

  11. I agree completely my family are my world but with their diagnosis helped me and them to get the world as they see it love them. I highly recommend a early diagnosis .

  12. Tengo una hija de 23 años que esta siendo evaluada para ser diagnosticada, pero al solo leer sobre asperger, se ha caido una tela de sus ojos, vi una chispa de certidumbre en su mirada, es como si todas las respuestas a todas sus preguntas fueran develadas una auna y eso para mi es tan gratificante, ahora entiendo, y nos entendemos mucho mejor, la luz llego a su vida y esa inseguridad de ser la rara, la diferente, se ha convertido poco a poco en seguridad por ser especial, . Amo a mi hija y apoyo los diagnósticos a si sea en la edad adulta, es el conocimiento el que ayuda a abolir la ignorancia. muy interesante su postura le felicito de todo corazon, entre mas informacion haya sobre asperger, habra menos bulling de la sociedad para todos estos angeles maravillosos que tienen una peculiar forma de ver la vida.

  13. What do you do if you’re convinced you have Asperger’s but your insurance won’t cover testing and you don’t have the funds to pay for the testing yourself? My birth mother has an actual diagnosis of Asperger’s, and I long felt that I had it before she told me she did have it. I can’t even hold down a job.

  14. Please help me. I don’t know how to get diagnosed. My life has been hell when it shouldn’t have needed to be and it’s getting too much to bear now. I am coming up 30, my mother has abandoned me because of my “behaviour” and my relationship is suffering because my other half won’t even try and begin to understand me now things are getting harder. I just need to be understood and I don’t know where to turn but I can’t keep going on like this.
    Please help me

  15. Reblogged this on Nature in the City and commented:
    Reblogging,
    I was diagnosed a few years ago now. While it hasn’t changed much in terms of accommodation or assistance, it has changed my outlook on my challenges and the importance of my needs. I can better accept myself.

  16. I was diagnosed with ASD at the end of 2013 aged 38. Having been treated for clinical depression for some 15 years I was, at the time, battling a “Double Depression” diagnosis from my psych. It fitted the symptoms, but I just knew there was something else. He was “not qualified to look at” the options I was presenting, and suggested I get a second opinion if I was not happy with his diagnosis.

    The reason I was questioning things was our boys. I had been filling out assessment forms/surveys to have our eldest two assessed for Aspergers/ADD; whilst ticking boxes for their symptoms, I had a separate list for me! At first it was one or two small things, but as the list progressed, I knew I had to follow this line of thought further.

    The hardest thing was to find someone who would actually do an assessment on an older, female patient! It was the boys’ paediatric psychologist who, upon hearing my concerns, agreed that she would assess me, (at the paediatric centre!).

    Two sessions was all it took for me to be formally assessed with Aspergers. I say “all” it took; it was the hardest sessions I’ve ever had, but praise God I had my mother’s support, (and her memories of me as a child/teenager!).

    I was worried that perhaps I was making it all up, that I really wasn’t the social misfit that I felt I was, and so the relief I felt when she said that yes, I very much had ASD, was great indeed.

    All those times I’d blown up at something, or someone, or myself; there was a reason,
    All the failed attempts at study and business ventures; there was a reason.
    All the perfectionism and agonizing over school and A+ grades; there was a reason.
    My entire life suddenly just made sense.
    And I literally felt myself relax. Just like that.

    And has it changed anything for me now? SO much I haven’t the room to write about it here! But it has given me confidence; I am learning what I can, and cannot do, and when to push the limits and try something new, and when to say, No, I really cannot do that…yet.

    And the best thing? I have ditched one of the anti-depressant medications that I had been on for some 15 years! Granted, going cold turkey was probably not the best way to do it, but through God’s strength and grace, I am doing better today than I was 6 months ago, better than I ever have in my life.

    I can’t speak for all men in the medical profession, but the impression I received from my experience was it was easier to just leave me in my depression diagnosis; that was how it would be for ever, suck it up and accept it. And if there’s one thing I could spend my life doing right now it would be to offer hope that there are those prepared to rediagnose when necessary, and to never ever stop fighting for YOU! Do the research, ask questions, and keep on seeking someone who will stand with you in your corner and get you the answers you want, that you need, and that you certainly deserve to have.

    Blessings,

    Helen ❤

  17. Yes, I love this. Thank you for writing it. My life would have been so very different, so much better, if I had known this as a young girl. I have had years of torment, depression, anxiety, and distress, and to finally know what it was all about is a massive relief. It is due to people ho have gone before me that I have realised in my late twenties, which gives me the gift of my thirties now to live my life fully and in full knowledge. I want girls to have this younger than me though, I want autistic girls to know who they damn well are and to be proud of themselves!

  18. My husband was formally diagnosed at the age of 44, what it changes for us was that I began to understand that he not passive aggressive, he does not do stuff to tick me off. I began to understand that if he was under pressure he feels the need to run away sometimes literally. Since then our marriage has been a lot less under pressure as well. Although we went for couples therapy for a while after his diagnoses, we stopped going as he felt that it was benefiting me more than him. I have since continued therapy by myself, I find that this gives me an opportunity to discuss things that might have happened without fear of judgement for my husband.

  19. I really agree with your points. I was dx age 34 following my sons dx of ASD. Currently FIGHTING to get my daughter (6) her dx. A fab read, perfect.

  20. Receiving a diagnosis at age 58 was a real shock. 2.5 years later and I am finally beginning to get comfortable in my own skin again after a classical collage aged ASD robbed me of my intellectual pathway.

    What a wild ride it was for almost 40 years!

    Making peace with myself and with life is the greatest gift I have received from the late life diagnosis.

    Now I am wondering how many women in their 50’s and older are still undiagnosed, misunderstood and struggling. And how to aid mental health professionals in finding them.

  21. After having to leave my original academic track at age 19 I finally got the answers with my diagnosis at age 58. 30 years in therapy. Whew…

    Diagnosis was just 2.5 years ago and I turned down graduate school as an MSW due to the shock. (Career as a pharmacist had ended due to hand injuries).

    Finally starting to begin to feel comfortable in my own skin and have to constantly check in with myself about whether I am “pretending” or whether I am making choices based on my true self.

    It is my sincere hope that other women who have been misunderstood will be diagnosed in their 50’s and later. I am beginning to wonder how we can get this information to mental health professionals.

    Yes, I am finally making peace with life, with fits and starts.

    No family members are particularly interested. I do have a very supportive husband, who was/is also a late in life surprise.

  22. A diagnosis didn’t do much for me as my family still jeer at me and the shrink said some very nasty things ( and I’d worked out I had Aspergers already). But I hope it helps future generations of girls get a diagnosis.

  23. I am an older female (68) and only recently discovered who I really am and why I am the way I am (Aspie). It has been amazing going back and understanding my life experiences now in a whole new light. I would love to have a formal diagnosis just for the professional validation, although I have no doubt at all that my self diagnosis is accurate. Unfortunately, I live in a very remote area and am retired on a low fixed income. I understand that formal diagnosis takes a long time and is very expensive. My husband is very supportive and I am now in the process of enlightening my daughter who is also supportive so far. I have a very limited social circle (surprise!), so no problem there. Even though I am chronologically older, I feel young and am excited about my new outlook on life as an Aspie. Any input or guidance would be appreciated though. Thanks for listening.

  24. Before I was diagnosed, I had multiple people telling me that there was no reason to pursue a diagnosis. I was reminded that there are no services for adult autistics in my community, that it wouldn’t change anything, that I’d still be the same person, and why did I need a “label”? I have found, though, that while it is unfair, the world at large will not take you seriously if you self-diagnose with Asperger’s or another autistic spectrum identity.

    One of the benefits has been that I can tell other women that I am autistic and I understand what it’s like. I’ve also found that there are younger women (by “younger” I mean I’m literally old enough to be their mother) who come to me for advice and support. “I need to talk to somebody who’s autistic like me.”

    1. That’s it exactly purpleaspie. A diagnosis is one of the few ways we have of encouraging others to take our experiences seriously. To prove, in a way, that women with Asperger’s do exist and therefore if we exist then girls with Asperger’s also exist. Change comes slowly enough as it is and there is absolutely nothing to be gained by denying ourselves access to one of the few ways we may have to speed up the recognition of female Autism.

  25. I’m wondering if there’s anyone in our situation out there who is older than my 77. My two sons were diagnosed in their early 40s, and through being involved in their diagnoses, it hit me right between the eyes that everything we were discussing applied to me as well! During the ongoing days, the relief that wo many have mentioned was almost overwhelming–my whole life was suddenly explained! (Also, it explained my father, who died in 1989.) I don’t feel a need to be formally diagnosed, with no career/schooling concerns, and I certainly don’t need it for my own sake–I’ve never been so sure of anything in my life. I’d love to be in touch with someone else who is my age. I’m feeling like the oldest living Aspie in the world. 🙂

    1. Hi Joy. Thank you for sharing and yes there are women your age who are in the process of only now being correctly diagnosed with Autism. A few have commented on different posts. If you read through the comments on ‘The Gas lighting of women with Autism’ and a few others posts you should be able to find them and get in touch. Hope that helps.

  26. This is so well written, and just what I was pondering this afternoon. My Doctor told me, “You don’t need a diagnosis if you know, you know. Just carry on knowing because there is no assistance or funding for adults anyway.” I do know and that is fine, but if everyone else knows too, that is even better – both for myself and my diagnosed daughter. I spent my whole life not knowing, so all those people in my life still don’t know -and I think it is time that they all do. The first thing people asked when I told them of My Daughter being Autistic was “Did you get a formal diagnosis?” So it is important to me have that paper, thank you for this. Perfect timing.

    1. So glad it helped Maria. I do so believe that it is important for those of us who have been diagnosed to stand up and insist that we be counted in. This may well be one of the only “officially recognized” ways to challenge the currently erroneous beliefs and statistics surrounding the rates of female autism.

      If we don’t, then we may be at risk of being compliant in allowing the cascade of false information and misdiagnosis to continue on into the next generation and the next.

      It’s becoming obvious that professionals are not interested in bring this issue into the light of understanding, unless there are dollars in it for them.

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