A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

[Trigger warning: mental illness]

Dear Parent/Carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that this little person might be a little…different. ‘Autism’ is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you might not go through with it. After all, she seems to be doing fine right now. Yes, she’s a little on the ‘quirky’ side, but on the whole, she seems to be coping; you’ll just leave things as they are. Besides, you don’t want to ‘label’ her unnecessarily.

Thing is, though, we’re always labelling people.

Clever. Talented. Bright. Inquisitive. Curious. Compassionate. Kind. Funny. Sociable. Chatty. Tomboyish. Earnest. Bookish. Kooky. Quirky. Eccentric. Precocious. Gifted.

Those don’t sound too bad, do they? Sure, you might be more keen on some of these ‘labels’ than others, but on the whole, there’s not a lot to worry about here.

What about these?

Bossy. Opinionated. Controlling. Aloof. Selfish. Rude. Shy. Anxious. Naughty. Irritating. Antisocial. In your face.

Is it that you don’t want to label your girl, or is it simply that you don’t want to label her as ‘autistic’?

She’s fine now. She’s coping, as you say. But what about in the future?

As she grows older, other labels might start to creep in.

Withdrawn. Lazy. Lacking in application. Arrogant. Stupid. Inconsistent. Over sensitive. Away with the fairies. Disorganised. Teacher’s pet. Uncooperative. Defiant. Difficult. Out of control.

And it might happen that you seek out professional help on behalf of this girl, who may seem to be so brilliant in some ways, but to be struggling so desperately in others. And then, other labels might be used.

Bipolar. Borderline. Obsessive-compulsive. Clinically depressed or anxious. Anorexic. Bulimic. Suicidal.

And some of these will be so wide of the mark, it would be laughable if it wasn’t so sad, and so wrong. Observed autistic behaviours will be wrongly categorised, and a wrong diagnosis applied. And the struggles will continue.

Other labels will, equally sadly, be correct, and will be as a direct result of the pain, confusion, frustration, stress, and exhaustion from puzzling over her identity; from trying, or at times refusing, to fit in, in a world which she doesn’t understand and which doesn’t understand her. From the onslaught of overwhelming information and sensory input. From trying to ‘cope’.

At times she may try to ‘mask’. And if she does so, sometimes she will do so successfully. And at other times she will get it woefully, woefully wrong. And either way, it’ll be stressful to keep up, year upon year upon year.

She might struggle with education and employment.

Or she might still do well in life.

But even if she does, something inside will never feel quite ‘right’. Something will be missing. The key. The glue. I hesitate to use the words ‘puzzle piece’, they’re too loaded and emotionally charged for many of us; but perhaps they’re appropriate here. This girl is not the puzzle, but she isn’t getting the full picture. Something that should be identified will not be.

What would happen if she did receive that label, earlier in life? Before so much of life has got in her way, obscured the picture, prevented the right details from coming through?

She would still, of course, find some things easy, and some things very, very difficult. Inside, she’s still the same person, and autism is a huge part of that. And support can be patchy (that’s something of an understatement, really).

And yes, there is stigma attached to the ‘autistic’ label. But there are many of us trying to change that. And, slowly, it is getting better.

But by knowing – fully – who she is, your precious, wonderful girl can start to take ownership of who she is, to embrace her identity. She can work with who she is, rather than against it. By doing so, she can be happy.

If she goes to college or university, her label may help her to access the kind of support with her studies that I could have done with, but never had.

When she’s in employment, that official label will mean she’ll be legally protected, and entitled to adjustments to enable her to do her job to the best of her ability. Understanding who she is might make her less likely to be disciplined for her behaviour, to lose jobs because of her behaviour, or struggle on in roles she is unhappy with and finds stressful.

Again, support might be patchy. Really patchy. Her employer might not be among the most enlightened. But an official diagnosis greatly increases her chances of getting any support that is available.

The assessment process might be long. Frustrating. Emotional. The right conclusion might not be reached for some time. But the earlier she knows who she is, the more able she’ll be to learn the triggers for her meltdowns, to understand and mitigate some of the ways her autism makes certain things difficult, and to celebrate the strengths it brings.

There may be times when she rejects her label; and of course, she’s perfectly entitled to do so, as long as that’s her decision.

There will, sadly, also be times when disclosing her label might cost her dearly. And that’s awful. And we must all work to stop that happening. We are doing so. And we’ll keep on doing so until it does stop.

But an official label may give her choices, and an understanding of herself, that she would otherwise be denied. And that’s important. That’s vital, if she is to find her place in the world; if she is to thrive.

And she can thrive.

And whenever she chooses to make contact – to engage – there’s a whole community of likeminded individuals out there, who’ll understand her. Who’ll know her struggles. Know where she’s coming from. Who’ll help her, and provide a safe place for her to be herself.

We’ll help you too. We like to share our knowledge and experiences. We’re keen to educate. And we’ll do whatever we can to help you understand. I know you want what’s best for your girl. Of course you do.

And when that girl of yours comes to us, we’ll welcome her. With love, understanding, an open mind, an open heart, and open arms.

Yours,

An autistic woman who understands.

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93 thoughts on “A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

    1. I’m crying. We are just starting out on our journey with my 13 year old daughter. There is so little out there for ASD in girls. I don’t know where to look. I have all these questions in my head, will she get a job? Will she get married? Will she move out? And I know that those are worries for everyone ASD of not, but I worry the label itself will stop her. I also worry that we will go through the assessments and they will tell us that there is nothing wrong, and your daughter is just an unsociable bitch who is more unwilling than incapable of understanding other people’s feelings. Does anybody else get that?

      Liked by 2 people

      1. Keep reading. Keep finding blogs by autistic people – especially women. The more you read, the more you’ll learn about how diverse our experiences are. Many of us are in long term loving relationships, fulfilling work, education, and so on. Not all of us. But then not all humans are generally.

        And for many of us, it might have taken us a fair bit longer to get to a place where we’re happy (and we might still be working on that).

        I wish I’d had that diagnosis when I was younger, as I’ve had a lifetime (well, 36 years) of feeling stupid, inept, lazy, incompetent, and inferior despite my intellectual abilities and a whole host of other evidence to the contrary. Of course, I can never know how I’d have reacted as a teenager if I’d had that diagnosis, but with hindsight, I’d much rather have had the explanation when I was younger than have lived with so much confusion all my life. I could always choose to keep quite about it and not disclose (not an option in my case; I’m too much of a loud mouthed oversharer), but at least now I know why.

        Get together as much evidence as you can, if you do want your girl to go for an assessment. Involve her in the process, if you can. Talk to her, and listen to her, about the things she struggles with or finds difficult, and also the things that fascinate her, excite her, bring her joy, and her strengths. Build a picture. Have as much of that noted down, as well as in your minds, before you seek a referral. And give it plenty of time.

        There’s a danger you, and she, won’t be believed. I don’t have any answers to that, and I hate how often that happens. But all you can do is try.

        Thanks for commenting, and I wish you and your daughter all the best x

        Liked by 1 person

      2. If it helps, those worries were exactly mine when I finally started seeking diagnosis in my 30s, “What if I’m just exhausted by socialising because I’m lazy? What if they tell me I’m ridiculous? Surely everyone is like me, I’m just not as good at it?”

        But no, it was clear to the experts that I’m autistic. A perfect version of me, not a lazy version of everyone else. That’s the problem really, the rest of the world will give you labels no matter what, and those labels will be harmful and wrong, “Lazy, unsociable, arrogant, cold, aloof”. I’m not any of those things, but I’ve been labelled all of them.

        Assessments will always depend on the person doing them. If they don’t know much about how female autism presents, they may get it wrong. If that does happen then there are always other options.

        For expert advice, Sarah Hendrickx is fantastic. She is both an expert in autism in girls, and a late-diagnosed autistic woman. I think you can find some of her talks on YouTube. She also has a company that offers Skype consultations if needed. There are some great resources out there for autistic girls.

        Can I add that no matter what, she’s got you on her side. That’s a huge thing. You know she’s not unsociable, so you can make sure she gets time to rest after socialising, without pushing her to breaking point. You can support her in her needs, you will never be the voice saying “you’re lazy”. Don’t underestimate just how much of a difference you can make.

        The autistic people in work are the ones who followed their passions. Find the ways to bring her special interests to life, be they nature, or art, or writing. Be there to guide her around the practicalities when needed.

        No one can be certain about love and children. I never wanted to get married or have them, but I’ve done both and couldn’t be happier. Autism has never limited me on that front. My directness has been useful for making those connections 😄

        It will be ok. And when she’s ready, there is a whole community of people just like her, waiting to welcome her with open arms. Diagnosed or not. We are all different (just like any other group), and there is a space for everybody.

        There are many many autistic voices out there. Many parents find reading their blogs really help them to understand what they can do to support their children. Although we are all different, you’d be amazed by some of the similarities.

        Everyday Aspergers has a great list of female symptoms for you to check out
        https://www.google.co.uk/amp/s/everydayaspie.wordpress.com/2016/05/02/females-with-aspergers-syndrome-checklist-by-samantha-craft/amp/

        It’s going to be ok. It really is.

        Rhi

        Liked by 2 people

      3. Unsociable bitch – yes we get that too – and sometimes we believe it. Even family have difficulty understanding what is actually going on. Our daughter was not diagnosed until just turned 15 and the road has not been easy at all. IMHO – the earlier the diagnosis the better – so that you have more of a chance to normalise who she is for herself. My goal is for my daughter to embrace her differences, but at 17 that seems unattainable. I just keep reading blogs like this, by adult women with ASD, and keep believing that somehow my daughter will get there. Get your diagnosis, do your research (based on what you find), get ready to advocate BIG time, and most of all, look after yourself. Find the support you need from other mothers who are living it.

        Liked by 2 people

      4. You’re just so early on in the dx, take a breathe. She’s the same child except you now have an answer to how to understand her better. All Autistics are different, just like all non-Autistics, so who is to say what any child’s future holds? Have her embrace who she is and be proud of being Autistic. It may be a more difficult road but WOW it just makes the good things more fantastic! NTs don’t get to experience the extremes and details like we do, our extreme joy in the things we love is what makes the uncomfortable aspects of life so worth it.

        Liked by 2 people

  1. Oh, this has made me think! I was diagnosed about 2 months ago and am still adjusting. We strongly suspect my 9 yr old son is on the spectrum too but we’re holding off any formal diagnosis as he doesn’t seem to be in any distress. You’ve given me some real food for thought.

    Liked by 3 people

    1. Thanks for commenting – glad to hear it! 😊 Yes, we’re still waiting for our 4yo to be assessed, but it was finding out about autism for her sake that got me convinced to get my own diagnosis. In the grand scheme of things, my life has been reasonably successful, and very fulfilling. But I still don’t want my daughter to endure the pain and anguish I’ve suffered internally for so many years because of not fully understanding who I am.

      Liked by 1 person

      1. Exactly, my experience is similar and what you’ve made me think about us that for many years I didn’t present as distressed either, but I still suffered unknowingly. If diagnosis protects my boy from that then I’d go for it in a heartbeat. But in some ways I’m not sorry I wasn’t diagnosed as a child. This is going to take some serious thought and discussion. I hope your little one is assessed soon and our children will benefit from living in homes where they are better understood and supported.

        Liked by 1 person

    2. This was shared on a page Im following tonight. The timing was perfect, we’ve found getting the ball rolling on a diagnosis for our little girl to be difficult & overwhelming. I was in two minds about proceeding, this article really put things into perspective for me.
      We will be continuing on with the diagnostic process. Thank you so much.

      Liked by 1 person

  2. I appreciate your post so much. My daughter (who received an Aspergers diagnosis at age 7) is now 18. She spends a lot of time on the Wrong Planet website. She has found her tribe and I am so happy for her. She has just graduated from high school and is not quite ready for the jump to university; I worry for her in some ways yet I am also so proud of her for embracing her “label” and seeking community in a place and way that works for her.

    Liked by 3 people

  3. I cannot NOT like this.

    I’ll tell you why.

    I trained in engineering, teaching, and psychology. And the number of times I’ve had sociologists telling that ‘labels are anything from useless to bad because labelling theory’ … many have meant it in as positive a way as they can think of it, but they miss what it is that labels can mean when given appropriately and what the possible negative contrasts to that one label are. . You delineate those contrasts rather comprehensively.

    I’m autistic and I’m the dad of a wonderful autistic young woman. And that is a much better label than any that fails to tell accurately both the difficulties she faces whilst also recognising the strengths that she has.

    This article was sorely in need of being written.

    Liked by 3 people

  4. “She might struggle with education and employment.

    Or she might still do well in life.”

    …Or she could do incredibly well in life…*and* always still be struggling and not know how to explain why things that seem easy to her peers are so hard for her.

    And when that’s the case, it can be hardest to get anyone to believe her or understand.

    Liked by 5 people

  5. At 37 I have been formally diagnosed. There are a lot of things I struggle with. And it seems to get worse the older I get. But I also achieved a lot. I hold 2 university degrees and have been working for the same company for 10 years. But I do feel that I need help now more than ever. I fully agree with this letter. Get that assessment done as soon as possible!

    Liked by 1 person

    1. Thank you! I’m so glad it’s connecting with people – I come across the “I don’t want to label her/him” thing so often, and it’s always well-meaning, but so many people are unaware of the hidden, deep implications of that decision.

      Like

  6. Thank you for this. My daughter has just been diagnosed at 45. She has spent a lifetime trying to fit in, being almost there but not quite and the pressure of all this, the bullying and trying to grow up, led to mental illness. It has been SO tough for her since she turned 18 and she has been ill and had relapses, when the stress for too much, many times. Despite all of it she is amazing and I am so proud of her. The diagnosis came as a relief because it explains so much. Am glad she is being offering support in London where she lives. This is a brilliant article making sense.

    Liked by 2 people

  7. This piece is so beautifully and eloquently written. Mama pineapple, I cried when I read this. It describes so closely my life and life with my half diagnosed/undiagnosed/wrongly diagnosed 9 year old daughter. This gave me hope. Thank you, thank you thank you. Sincerely, Amanda

    Liked by 2 people

  8. Many others have said it already but thank you. Thank you so very much for presenting this message in such an eloquent and powerful way. I wasn’t diagnosed properly until I was in law school but when I finally knew that I wasn’t “stupid and crazy,” but rather Autistic, it made such a difference. Now I’m proud of who I am and I am no longer alone. Labels do matter, as does identity.

    Liked by 2 people

  9. Thank you for posting this. My son was diagnosed and friends have question is it a good thing to put a label on him. I’m glad you and I see it the same way is that it’ll give him support and protection out there away from home. Thank you again for posting this.

    Liked by 2 people

  10. On the flip side, I have been seeking a diagnosis for my daughter for years, but cannot get a “medical diagnosis”. Although she presents with various “symptoms” we are always told she doesn’t quite fit any and is a medical mystery. She very clearly is affected, as she is now 18 but mentally seems more like 6.
    Since we have no “medical diagnosis”, insurance doesn’t cover many of the therapies she needs. School was a nightmare. I eventually had to pull her out to try homeschooling. I have had to quit my job in an attempt to educate and provide care. Since she is 18, and “not diagnosed”, her father has decided to stop paying child support.
    I see many of her peers who have the medical diagnosis getting wonderful benefits. I am so worried for the future. I wonder what will happen to her, and who will care for her if I fight this battle to an early grave.

    Liked by 2 people

    1. Thank you for commenting, and I totally agree. One of the things the clinical psychologist asked me before beginning my assessment was how I’d feel if the conclusion was that I have ‘autistic traits’ but no firm diagnosis of autism, and I have to be honest and say this would have been devastating to me because of the struggles I feel I’ve had. This must be such a dreadful situation for you and your daughter.

      I’m not familiar with how things work in the US, but certainly in the UK, there are services and support you can only access with formal diagnosis. I’ve been very, VERY lucky with work, in that my department have made many adaptations to support me to do my job effectively, without the formal label of autism as that’s something I only sought recently – it was simply the case of supporting an employee’s needs (they’re very accepting and supportive now they ARE aware of my formal diagnosis, and that gives me legal entitlement and protection, but they have ALWAYS been supportive).

      And many schools (at least primary) will provide some support to students with identified needs, regardless of diagnosis. But without having something ‘on paper’, you’re not protected, and don’t have that automatic entitlement. And any support services that aren’t ‘ad hoc’ won’t be offered. It’s an absolutely awful situation to be in.

      What would be fantastic would be if the world would recognise the complete range of diverse behaviours, perceptions, and ways of thinking across all of humanity, and address people’s needs, regardless of what label they do or do not have. But sadly that’s not a reality.

      I really hope something can change for the better for you and your daughter.

      Like

  11. Perfect timing and so beautifully written. Thank you so much for this, i’m crying as I write, tears of relief and recognition, the pain of a life time of trying so hard and failing, confusion and mental health problems that, hopefully, our younger generation do not have to experience. God bless you, I stand alongside your courage and hope that things are improving and these beautiful and brilliant brains will find thier much needed place on this planet.

    Liked by 2 people

  12. My son is now 23 and we’ve suspected for years he’s on the Autistic spectrum – Aspergers was mentioned by many when he was younger. When he was about 8 years old we asked the school and they told us ‘we’ve just had a child diagnosed with Aspergers and he’s nothing like that’ and ‘you don’t want to label your child’. They reckoned he would grow out of his behaviour. I stupidly believed the school and gave up pushing for a diagnosis for him. Fast Forward to his 20s and he still has these quirky behavioural traits that now occasionally interfere with his adult life. We decided (him and me) that his quirks could be problems in his life and have now been waiting over 6 months for a referral. We don’t want to label him but we do want the support a diagnosis could give him.

    Liked by 2 people

  13. Reblogged this on A Journey with Purpose and commented:
    As a female who identifies myself on the spectrum, but does not have my parents approval, I am still debating in my mind whether to seek a diagnosis on my own or not. Whether I am coping well enough in life, whether I will really get more support with a diagnosis, and whether I really want to be labelled as autistic… I think that if I learn more of my triggers, personality, and coping mechanisms over time, I will know myself well enough and make accommodations for myself. I believe that there is understanding out there – even though it may be difficult to seek for, I am striving to look for it in the right places and embracing my identity as a child of God.

    Liked by 2 people

  14. Every word of this meant something to me. My daughter is only 2.5 and is coping extremely well, to the point where only her dad and myself see she is autistic. She is currently awaiting assessments. I also have a son with autism and have come to realise I am also on the spectrum. I grew up not knowing why I was different, why I struggled to make friends, why I was such a failure when I tried so hard. Thank you for your words. From a 28 year old autistic woman who also understands x

    Liked by 2 people

  15. Thank you for this. My daughter was diagnosed last year – age 16. The doctors asked me why I wanted a label and I told them that she already knows she’s different. If she has the means to understand that better and to know she’s not alone, that would make a huge difference to her.
    Sadly, while the diagnosis has help, we are all still struggling and while I know that I did everything I could to help her earlier, it took this long to find the answer. In the meantime she has had a lifetime of trying to cope – bringing out all those difficult behaviours – and she doesn’t yet know how not to alienate everyone that tries to help her. Rather than supporting her, her teachers seem to believe this is just another excuse.
    I urge any parent who has a suspicion to get it checked out. You need the tools to help your child build effective coping mechanisms and you need the support yourself.

    Liked by 2 people

    1. Thank you so much for commenting, Sandra. I’m glad that diagnosis has helped your daughter gain some better understanding of who she is. Unfortunately, I also recognise so much of what you say about lack of support and the difficulties building coping mechanisms. Sadly, there is so much focus of funding on finding causes and ‘cures’ for autism, but nowhere near enough on supporting those autistic people, and their families, who are here, RIGHT NOW, trying to make sense of everything, and just trying – often struggling- to ‘get by’.

      Like

  16. I’m autistic and obsessed with labelling myself with personality theories. They help me understand the parts that make me who I am. I am surprised that more people do not use personality theory, to be honest.

    MBTI: ESFJ
    Temperament: Choleric (ChlorSan)
    Alignment: Chaotic Good
    Enneagram: Counterphobic 6w7
    Tritype: 613 (cp6w7 1w2 3w2)
    Big Five: Highest in Openness (88) and Neuroticism (87). Neutral in Conscientiousness (46) and Extraversion (53). Low in Agreeableness (10).
    Jungian Archetype: Hero
    Learning Style: Verbal/Linguistic-Interpersonal-Tactile
    Learning Motivation: Process-Social

    Liked by 2 people

  17. Since receiving a diagnosis of autism for our grandson, the rest of us in the family have recognized autism or the Broader Autistic Phenotype, the autistic temperament, in ourselves. It is not only important for an autistic person to recognize their strengths and challenges to be able to deal with them, it is important for their family members to know themselves well. More often than not, we are all on the same spectrum and can become each other’s best resource.

    Liked by 1 person

  18. This is a beautiful post, so accurate, so true. We like to describe our daughter as “a girl with autism”, rather than “an autistic girl”. Small difference, but big symbolic value if one wants to get away from labels.

    Liked by 2 people

    1. Thank you so much for commenting, Catharina! I’m glad this post resonates with you. ☺️

      Just to explain my perspective: like many “people with autism”, I prefer identity-first language (i.e. I am an “autistic person”). I’ve actually compiled a page of resources that I hope will help to explain this perspective, if you’re interested in learning more about why I use language in this way: https://mamapineappleblog.wordpress.com/information-and-resources/identity-first-language-and-why-its-important/

      I wish all the best to both you and your daughter. ❤️

      Like

  19. Wow, a very empowering article. My Grand daughter was fortunate to be diagnosed at two and a half and has all the support that goes with diagnosis. I see some of her traits in me. However, my GP does not think I am Autistic. What path do I take to find out?

    Liked by 2 people

    1. Sorry for the late reply – I work full time and have small kids so very little mental time and space! Where are you based? In the U.K., if you want an NHS (not private) assessment, you *have* to do it via your GP. I’ve given my own perspective here:

      – Basic info: https://mamapineappleblog.wordpress.com/getting-assessed-a-personal-perspective/

      – My own full, verbatim DSM-V mapping: https://mamapineappleblog.wordpress.com/getting-assessed-a-personal-perspective/my-dsm-v-mapping/

      I’d recommend doing what I did – it takes time, and the DSM-V is horribly focused on deficits and impairments, but taking the medical perspective is what’s required. But basically, with the amount of info I provided upfront to evidence my reasons for requesting a referral, my GP couldn’t argue with it, really.

      The thing to do in gathering up all your reflections is to read/watch as many #actuallyautistic firsthand accounts of experiences of being autistic. I’ve provided a few examples here: https://mamapineappleblog.wordpress.com/information-and-resources/resources-by-actuallyautistic-people/

      (But there are loads of others!)

      The more you do this, the more you’ll start to recognise examples of your own feelings, behaviours, responses to stimuli etc that fit the criteria even though they’re not ‘obvious’. Sometimes the traits can be very, very subtle, but they’re still there – it can sometimes take a lot of time to realise this.

      Good luck. If your GP still doesn’t believe you, you may have to look at a private route.

      But I wish you the best with it. X

      Like

  20. An undiagnosed woman of 38 reading this with a currently undiagnosed daughter who may have autism but who also has 2 brothers with autism. Hard to tell how much is environmental and how much is her own beautiful clever quirky self, but she is definitely going for assessment.
    Thank you for sharing.

    Liked by 2 people

  21. I just met a family in which their son was not diagnosed (after multiple other diagnosis) until he was almost an adult. My heart aches for their path but am hopeful with support and understanding, that he will grow into the best version of himself. Thanks for writing this beautiful, heartfelt post.

    Liked by 2 people

    1. Thank you for your comment! Going half a lifetime without a diagnosis can bring so much pain – I know this firsthand. But hopefully that young man can grow and accept himself, and be happy with who he truly is.

      Liked by 1 person

  22. I love this so much! Our son is 11, in the beginning we agonised over what to tell him and when. The moment he started saying ‘I feel different to everyone else’ we told him. It’s been the best thing we could have done, he has completely taken ownership of it and has a much better self awareness and self acceptance than most adults do. It’s allowed him to be involved in the strategy process, so he has a deeper understanding of the things that set him off and his need to find ways around, over or under those things. A lot of people advised us not to tell him because it would make him feel ‘different’ but he already did feel different and isolated. Now he’s found a tribe of likeminded kids, they nicknamed themselves The Nerd Gang and are damn proud of it. They have so much confidence and fun doing their quirky things that they constantly have other kids wanting to join their group. They go into high school next year with a strong friends group, which makes my heart sing! We still have our rough days but telling him has made such a huge positive change to his life.

    In reply to classnbrass I think it was, who asked what to do if the experts come back saying there is nothing there… find another expert. Not all who are involved in the diagnostic process are familiar with female presentation because they have seen it so rarely. Get a second opinion, find parents of other girls diagnosed and find out who they went to. Don’t ever give up, you are your child’s only voice…. there will be days, weeks and months when it crushes your spirit and drives you to tears but keep on fighting because when the day comes, it will all be worth it. I also work with children with different abilities and I have yet to find a parent who wants there to be something different in their child, if you see it then stay confident in that. You know your child better than anyone else, you see her the most and get to see the best and worst of it. Stand strong mama!

    Liked by 2 people

    1. Thank you for this wonderful comment. I’m so glad to hear what a positive effect a diagnosis has had on your son. I love how he seems to be embracing who he is, and flourishing as a result. Since I wrote this post, my daughter has also been diagnosed, and I hope things will be just as positive for her. As you say, if someone already feels ‘different’ and isolated, an explanation is kinda useful! All the best to you and your boy x

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  23. Reblogged this on Lost and Found and commented:
    I was undiagnosed until a mature adult. My children were undiagnosed because I home-schooled. While there were some definite struggles for them, especially socially in high school, autism wasn’t anywhere on the radar. We simply didn’t know about it. Having the diagnosis much younger (for all of us) would have had its own difficulties, but ultimately I think would have been a greater benefit. One of the greatest things I’ve learned throughout my life is that knowledge is power, and that understanding, knowing as much as I can about something, makes me less anxious and depressed. Knowing why we’re different would, I think, have made a big difference. As more and more people are successfully diagnosed it’s becoming clear that autism is not as rare (or gender specific) as previous generations have thought. It’s not to be feared or maligned or “cured.” I pray my grandchildren and great-grandchildren, if they’re autistic (which seems likely), grow up in a world that is more accepting of difference and less obsessed with “normalcy.” That state is purely a matter of perspective.

    Liked by 1 person

    1. Thank you so much for sharing, and for your thoughtful comments. Knowledge IS power – I firmly believe that too. I hope that things work out well for you and all of your family, and I wish you the very best.

      Liked by 1 person

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