This is the 4th part in an ongoing series about being diagnosed as autistic at the age of 42.
Mourning the Loss
Eventually reality set in. I’m autistic.
Not the happy “Yay! I’m different! I’m unique! I’m special!” autistic.
More like “Holy crap . . . I’m defective . . disabled . . . challenged . . . never going to get any better” autistic.
This was when the mourning began. Once the bright shiny new this-explains-everything stage wore off, I started thinking about the other side of being autistic. I wasn’t going to “outgrow” my social awkwardness. I wasn’t going to wake up one day and suddenly have a balanced emotional life. The challenges I faced weren’t imagined and they weren’t going to magically disappear. They were with me for life.
This is me. This is always going to be me. Forever.
Talk about hard realizations.
The questions that arose were mostly variations of “how would my life have been different if I wasn’t autistic?” As I tried to envision taking away this or that autistic part of me, it became obvious that Asperger’s was responsible for a lot more than what makes me weird. It’s responsible for many of my strengths, too. Take it away and I’m no longer me.
That person I was mourning? She doesn’t exist.
Mourning the Loss
- Don’t be afraid to acknowledge your anger, disappointment, sadness or other negative feelings.
- Recognize your strengths along with your weaknesses.
- You’ve always been autistic and always will be. However, that doesn’t mean you can’t work on learning social skills, developing coping mechanisms or changing your lifestyle/environment in ways that support you.
Healing the Child (or Younger Self)
Growing up undiagnosed is hard. There is a lot of pain that comes from knowing that you’re different but not knowing why. Asperger’s gave me an explanation, but more importantly it gave me a starting point for healing that scared, confused kid inside me.
As I worked back through the more difficult aspects of my childhood, I felt like I was somehow mothering my younger self–revisiting each moment, looking at it in a new light and telling that younger version of me that it wasn’t my fault, that I’d done the best I could, that to expect more from me in the absence of support would have been unreasonable.
I wasn’t “obviously” autistic as a child–girls manifest ASD traits differently than boys in many cases and Asperger’s didn’t exist as a diagnosis in the 1970s.
I was, however, a handful. I was overly smart, easily bored, very curious and constantly in motion. Consequently, I got a lot of guidance from adults on how to behave properly. This reined in my more problematic behaviors, but it also made me feel like I was forever in danger of doing something “wrong,” especially when I “wasn’t trying hard enough.”
Being able to look back at my childhood and see that my behaviors were a result of my brain chemistry and not a result of “not being good enough” allowed me to begin to heal some of those lingering insecurities.
Learning more about Asperger’s helped me understand that I was bullied not because I was weird, but because I was socially inept. Reading about selective mutism gave me an explanation for my largely silent elementary school years–the ones where I never spoke in class unless forced to. Finding information about how ASDs manifest in girls shed light on why I had so much trouble maintaining friendships.
Each new bit of information absolved me of some perceived failure as a child and helped me begin healing some very old wounds.
Healing
- Learning more about Asperger’s/autism in children can help you understand challenges you faced in childhood.
- As an adult, you can choose to forgive the people in your life who hurt you as a child.
- It may help to imagine your adult self sharing your new information with your child self as a way to offer comfort or explanations for unhealed childhood wounds.
- If you find yourself having distressing reactions that are difficult to cope with, consult with a mental health professional or a trusted friend/mentor for help.
Coming next: Self-Diagnosis or Professional Diagnosis
Musings of an Aspie 
Life, it is indeed a journey, with many bends and straightaways. I am sure there is some immensely profound quote about that, but immensely profound quotes aside, it sounds like you are making your way through the journey with a desire to understand, heal and move forward. You are your lovely you, made to perfection just as you are meant to be. Enjoy!
It is indeed! This is the last of the introspective posts in the series for a bit and it felt good to write this part out and have it behind me for the most part.
This series is very helpful, as I am going through this transition myself. Thank you!
Thank you – it’s always good to hear that it’s helping others. 🙂
This series has been very helpful to me, for what I am feeling right now, regarding self diagnosis and what to do next. My 5 yr old son was diagnosed almost a year ago and that started my whilrwind of research.
Months later a stumbled onto the RDOS test and was confused scoring “likely an aspie”. I asked my husband to take it and he scored opposite of me as a NT. I had my mother take it too, scoring NT. So it was just me… I then wrote this:
http://dailyamazed.blogspot.com/2012/03/am-i-normal.html#.UQ6Tj6WCmSo
I am anxious to read the rest of the series and to sort out what to do next on my journey. Thanks so much!
My husband and daughter are also strongly NT and seeing their results helped convince me a bit more that my “likely an aspie” result wasn’t a fluke. I’m glad you’re enjoying the series. The next part has a lot of detail on the why and how of self-diagnosis so hopefully you’ll find it interesting.
Also, thank you for sharing the link to your blog. I’m adding you to my reader – your photos are gorgeous and will bring some color to my text heavy blog read each day (though I will read text posts that you make as well).
This is where I’m at right now, I think. This blog has been such a valuable part of this process for me. Thank you.
Thank you. This was a hard stage, so many ups and downs, and isn’t by any means linear. I still slip back into it at times. Hang in there with it – the process is worth it.
Thank you for posting on this subject. I know ‘this’ is where I’m at, yet, even with a child with aspergers, I’ve never asked someone who may be able to diagnose me. I see it as a gift, definitely where all my creations and amazing insights come from. And my daughter has been amazing from day one! It kind of puts us on the same wavelength. Thanks again, I love this blog and the valuable details it gives me.
Thank you for reading and letting me know you’re enjoying. Diagnosis as an adult is really personal choice, I think, and something to do if you feel you need it. For children, it’s essential so they can get services, etc. but once you’re out in the “real world” it’s a matter of adaptation and understanding how you function best.
It’s great that you see the positives for yourself and your daughter and especially for your relationship with her. I feel like kids on the spectrum who have parents also on the spectrum have a bit of a leg up.
just found your blog via twitter and wanted to say thanks. I feel like its me writing when i read it. I suspected autism in myself when researching dysgraphia and every moment was an OMG afterwards. The relief, the rewriting my past, the anger that no-one noticed earlier and then the sadness as I realised I wasnt going to get better. I’m still reading your blog and feel sure I am gonna relate to loads of it..thank you 🙂
Thank you! It means a lot to me when people take the time to comment, especially new readers. I hope that you’ve come (or are coming to) a place where things are better for you. I occasionally slip back into that mourning mode, but increasingly I’m feeling more and more often okay with how I am.
Asperger’s was a kind of answer for me (even if I’m only 14…) It explained why some of the more basic social rules (like not pointing out someone else’s errors in public or in their house) were lost to me, why I tended to have a more egocentric view in that I based what/how others should be doing based on how/what I could do. It explained my propensity for mathematics and my disdain of prompt-free writing (though my vocabulary now comes in handy as a songwriter.) I’m not diagnosed, and I’m likely not severe enough to qualify for a diagnosis and I don’t see yet how services could help me (we’ll see how that pans out next year when I go to a public high school.) It’s more a sense of closure, “That’s why I don’t really fit in and that’s why I do this or that.”
That sense of closure is so important. And if you ever find yourself at a point where you feel like a diagnosis would be helpful (needing accommodations perhaps) then you’ll have a starting place.
My 6yr old son has just been diagnosed which lead me to my own self discovery on researching his condition. While my childhood experiences have left deep emotional scars I feel a certain sense of relief that I will be there to guide my son through his Aspergers journey. I am committed to getting him all the support that I missed out on as a child. I have now taken on the role of “translator” between my husband (NT) & my son, hopefully lessening the divide between them. Thank you for your wonderful blog – it’s been so helpful to a newly diagnosed AS mother!
Thank you for the wonderful comment! I’m so glad the blog has been helpful.
Getting the chance to be there for your son and support him in the ways you would have wished for is priceless. He’s lucky to have you as a mom and as a “translator”. 🙂
i’m getting overwhelmed with this. i didn’t expect this discovery after finding out my oldest son has ADHD/high functioning ASD. there’s no question. but it’s like what gay people describe when they talk about wanting to come out. i’ve spent so long trying to make myself normal and now i know i never will be. but what do i do? i can’t talk to my husband. he’s so wonderful and loves my weirdness, but…he probably would just roll his eyes…i can’t get a diagnosis because really, what good would it do? there’s no medication for this, no procedure, nothing but coping mechanisms, and i can find those online or glean them from my son’s therapy sessions. i took the test (my 3rd one. same sort of results.) and i read the results pdf and all it did was confirm what everyone always told me growing up. you are so weird. even things i thought everyone did. weird. i feel maybe i should talk to folks about it, because they might understand me better and then maybe i’d keep more friends – i’m always just Not Talking To Anyone but Wishing I Had Friends – capitalized because that’s the title of the story of my teenage and adult life. God bless Facebook, otherwise I wouldn’t have ANY friends. i love people!!!!!!! but i don’t know HOW to love people, and i don’t want to fake something that should be real. and i just realized that i’m rambling anonymously on a comment thread that hasn’t seen a post since June. ok thanks, and sorry for complaining – mostly i know this is a good discovery.
No worries, I get comments on old posts all the time. Everything you’re feeling is very normal, so try not to stress too much over that aspect of it. It can be a very overwhelming realization, especially if you’re adjusting to your son’s diagnosis as well. There’s a really supportive autistic community online, including a lot of Facebook groups, so that might be a good place to start talking to people about your concerns. From there you might find that talking to your husband or others in you life would be helpful. It’s really different for everyone and how you feel will likely change over time, as you learn more about ASD and adjust to the idea. Best of luck with it. It really is a good thing in the long run.
thank you. you are one wonderful person. i really appreciate your blog, i found it while trying to find methods of coping with the holidays and my children, and found it so helpful. it’s one of my favorites now.
Aw, thank you. This made my day. 🙂
This chapter just convinced me to buy the “I think I might be Autistic” book when I’m able. I really need the closure with my childhood and how I was “not good enough”.
Thanks for the blog! I was diagnosed with Asperger’s in March; I’m almost 30 and I’ve been trying to be good enough, friendly enough, and never was. It was certainly a mix of emotion to receive a diagnosis – “So cool! I have my alien ID card now!! This explains my life!” and “I thought I was going to be okay someday, if I tried hard enough, but I never will be?? This is it? Am I gonna end up living on a park bench? But I don’t like pigeons!”
Ha – “alien ID card” is a good one.
Congratulations on getting your diagnosis! You’re probably not going to end up living on a park bench. 🙂 Thankfully there is a middle ground between the two options and most of us seem to do okay. But I totally understand your reaction and had much the same, though not simultaneously.
Hi – just to say… I love your blog. When my son was diagnosed ASD/high functioning 2 years ago at the Lorna Wing Centre I realised then why I felt different. I haven’t sought a professional diagnosis – though I am all about the neuro diverse according to the sel-test on your site. My daughter was diagnosed ASD/high functioning yesterday. Advocating for them has it’s challenges when I am over-loaded. I have tried our local support group for parents but it’s too much eye contact, smell, bright lights and noise for me. That’s why I am so happy to have found your great blog. It’s given me a place to come when I need a prop up. And I don’t have to make eye contact – yay!!! 🙂
I’m so glad you found the blog as well and it’s been a positive source of support. There’s a great group of people who comment here, so feel free to jump in with questions or reach to others for support.
It would not be surprising at all if you were on the spectrum, since both your children are and it tends to run in families. What we really need are more support groups for autistic/aspie parents of autistic/aspie kids (held in nice quiet, softly lit rooms). 🙂
Someone gave me the link to this posting after I wrote a message on an ASD forum saying I was really struggling after an initial diagnostic assessment. The support there & reading this has really helped. I don’t tend to think of reaching out to others when I’m struggling, so this has been a good lesson to remind me that it can help. Thank you for helping me to feel less awful. I will enjoy exploring your blog. Apologies, I can’t work out how to do paragraphs!
I suspected autism for years, finally started to do the research. Everything I read rang true, took all the on-line tests and scored 95% on all to them. Then consulted an old friend (Teacher) who works with autistic children and she agreed with my findings. I was not happy to find I was on the spectrum but it makes perfect sense. The social thing seems to be one of the most important criteria and I fit that too, but for me its the way ASD/Aspergers think, feel and make connections that finally convinced me. To make things worse, my medical provider will not diagnosis anyone over 18. I am exploring alternatives, but an “Official” diagnosis is going to take a lot of effort and money on my part.
I’ll be honest, what pisses me off the most is that I had to find out at the age of 50. But, c’est la vie.
I have a son on the spectrum. IT wasn’t until I saw a chart on how women with autism presented v. how men did that I had my lightbulb moment. I do not know if I am going to get a formal diagnosis, nor if there would be any real use in getting one.
However, when I realized that yes, I probably am autistic, there wasn’t mourning. I never treated my son, nor thought of him as defective. Sure, he needed a different set of skills to cope with the world, but nope, not defective.
What has been a relief to me is that okay, all those coping skills? No, they’re never going to make me neurotypical and I’m totally okay with that because they don’t need to. I don’t need to be NT to live a good life and make a contribution to the world. But I have this enormous burden of trying to find out what’s so WRONG with me (and has been all my life) lifted.
There’s NOTHING REALLY WRONG. Yep, austistic, and yep that’s gonna look weird in the face of the rest of the world, but if I think of my son as okay, but with a radically different point of view, I can apply the same kindness to myself.
When people Do It Wrong, and drive me up a wall, I’m free to laugh and let it go because I recognize they’re never ever going to match my narrative nor me theirs, and that’s its okay to let it go. I don’t know if that makes any sense or not, but the idea that I am probably autistic is really freeing to me!
I’m new to this Aspie idea at 33 – my husband sent me an online assessment less than a week ago. I’m still in the “This explains so much!” phase, but I’m also noticing things from when I was a kid (both good and not good memories) that fit the profile. I have bookmarked this page for when I enter into this next phase. Knowing that it’s probably coming, and having these tools available, will be so helpful. I love the 3rd idea in the healing section and the idea of figuratively sitting down with a younger me to offer information and forgiveness. Thank you for sharing your journey. It makes the path much clearer for a newb like me.
At 57 years old, I got a diagnosis of Asperger/Autism last week. Still unclear which. My councillor gave me a reading list and your blog was there, half way down the page. I read bits each day, with the tick box taking a hammering each time. Today I read this page… It feels like you are my twin sister. I didn’t know that anyone else could feel they way I did when I was growing up. It sucked from noon to night and selective mutism was my sanctuary for many years. Thank you for articulating your experiences, which seem to be mine too.
Well not noon to night, from morning to night really. Too fond of aliteration!!
“Growing up undiagnosed is hard. There is a lot of pain that comes from knowing that you’re different but not knowing why. Asperger’s gave me an explanation, but more importantly it gave me a starting point for healing that scared, confused kid inside me.”
I especially resonate with this opening paragraph right here because it sums up the reason why I want to pursue a formal diagnosis. When I talked to my parents about my suspicions in the past, they told me that it would make sense but getting formally diagnosed can hurt my job prospects or limit my opportunities in the future. Whereas, if I were to “pass” as neurotypical then no one could say anything or bully me for it. How I feel is that if I get diagnosed I could have a community that understands why I act how I do and find my own answers about myself.
The part about healing the child inside you really resonated. Reading it made me cry. I was not diagnosed until 29, and was so afraid of what to say for most of my life. Growing up undiagnosed creates many scars.
Hi Cynthia and all of you reading and sharing. I’m 70 years old and 2 weeks into the great discovery. 70 years not knowing! Thank you to all of you for making me cry so much. The coin dropped after printing a book of short stories. I read the stories out loud practising for the book launch. As I read, I realised that the stories were fictionalised accounts of episodes of my own life. i am an Art Therapist by profession and my interest in writing the stories was to express the deep emotions that arise from vulnerability in relationships. It dawned on me that the main character was on the spectrum, hence the pain and drama. Your own stories that you all share have touched me. I am still unhinged by the awakening but life is good. i am also writing to keep this blog alive. Its the most valuable for many of us. Did I say us? John