Update: I was diagnosed as autistic in April 2019
I was a lonely child – wait, that is not quite right – I was a solitary child. I felt separate. I craved understanding and acceptance from anyone who would give it and I felt bitterly rejected when it was not forthcoming.
But I was often blissfully happy, alone.
Reading and computer games replaced real life. Obsessions and collections became more important than relationships. I read for 18 hours straight. Teddy bears, crystals, trolls, magazines, figurines, stamps… there was no diverting me, once I had chosen a passion. And with each new addition, perfectly placed, with each chapter completed, each boss vanquished, each object arranged just where it should be – I felt an addictive little buzz of happiness that gave me infinitely more pleasure than the fraught interactions of teenage friendships.
I found navigating the politics of social groups challenging. To say that I see things in black and white is not quite right. I delight in the grey, in nuances and subtlety. But I have a profound sense of injustice and a tendency to be overly wordy. I seem condescending even when that is not my intention, I think. Those I was most desperate to impress eventually excluded me, one way or another, intentionally or unintentionally.
I was laughed at. I was bullied.
I have always found it difficult to make and keep friends and I am not misguided enough to think that it was always their fault. I am difficult to manage. When I formed friendships, they were intense, suffocating almost. The weight of my expectations and adoration was too much for them to bear. Those who stuck at it are numbered in single figures and have become family now.
I had – I still have – extreme emotional reactions to things. I am no more able to manage them now than when I was at eight years old and boy in my class looked at me and said ‘Ewwww!’ Then, I sobbed for hours. Now – well, I still sob. I fly off the handle. I become overwhelmed with pain – grief, almost – at the smallest sign of perceived injustice or dislike. Most days, I feel something so deeply that I do not know how to function through it.
I struggled – I still struggle – with unwanted sensations. I do not like to be touched unless it is expected and by people I know. Noises can be madness. The buzz of the toothbrush charger in the middle of the night feels like a physical pain. When I am anxious, upset or unwell, these feelings become heightened. I cannot stand things to be too loud, will not tolerate being touched in a certain place, by a certain texture. I am clumsy, uncoordinated. Spacial awareness and a sense of direction are not my gifts.
I became trapped – I am still trapped – by my own trains of thought. Anxiety is my constant companion. An idea forms and it cannot be shaken. I am ill. My children will get ill. There will be an accident. That person hates me. If I am not careful, these thoughts grow, become uncontrollable. When Biggest was diagnosed, I feared he had a genetic condition related to autism and I became obsessed with it, spent every spare hour researching it – for months I would do little else but think of it, convince myself that he had it, make myself sick and miserable in a never ending cycle of Googling and worrying – until the results came back clear.
Obsession, passion, empathy and anxiety – they are inextricably linked and the core parts of my personality.
Autism in girls is notoriously under-diagnosed. One of the main theories for this is that girls are much better at masking their symptoms and they often do not have, or do not seem to have, the same communication and interaction difficulties as their male counterparts.
I have a degree in English and a Post Graduate Certificate in Education. I was an English teacher for twelve years and I dedicated myself to understanding language, and to communicating that knowledge to others. How could I possibly be autistic? But the interactions and communications of people, they are not quite the same as the words on the page, are they?
I busy myself with the thoughts and feelings of others. Sometimes, they are a mystery to me. I become preoccupied by other people’s opinions. I constantly second guess motives. Yet, when someone is suffering, I know it. Deep down, in the pit of my being, in the visceral parts of my brain. I feel it with them. Can a person who occupies themselves so wholeheartedly with the thoughts and feelings of others be autistic? I had thought not. Lately, I feel like I might have been thinking about it in the entirely the wrong way…
My imagination is my constant companion, my greatest friend. Sometimes, when I have taken tests to rate the likelihood that I am on the spectrum, they ask questions like ‘Do you ever find it hard to follow the plot when reading a novel?’ and ‘Do you struggle to understand characters’ motives when reading fiction?’ No. Never. The worlds inside the pages, the worlds inside my head – they always make perfect sense. The tests usually place me just outside the spectrum and it is my answers to those questions that place me there, I am sure.
I am kind, generous and fiercely loyal. I am easily hurt but I cannot bear for people to think badly of me. I form grudges in an instant and abandon them just as quickly.
I struggle, every day, to manage my thought patterns and emotions. I have felt this way all my life and I have blamed weakness, or mental health, and I have assumed it must be the way everyone is but they just cope better than I do.
Perhaps that is still true. I really do not know.
What do you think?
Linked with Posts from the Heart from Mummy Times Two
I wrote a similar post last year. I do think I’m on the spectrum but just can’t decide whether to seek a diagnosis or not. I know it wouldn’t make a difference to my life, it’s more curiosity I guess. x
Thank you. I feel the same about it. Not sure if I am going to do anything with these thoughts yet! x
I have also taken some of the on line tests with the same result. Some of the other blogging mamas of autistic children that I follow have also asked themselves this question. I wonder if we begin to see the world through an *autistic lens* from spending so much of our time trying to make things easier/better for our little ones.
Some of those mamas did seek out diagnosis and were confirmed ASD. A lot of them didn’t receive their diagnosis until their mid-late 30s.
With or without a diagnosis, ASD or NT, you’re an awesome mama!💌💌💐🌼🌹
Thank you so much. My son has taught me so much about so many things and I empathise with him so much when he is struggling. I definitely think it has made me think about things differently. I am not sure what I am going to do yet! Thanks so much for commenting.
Me too! I feel like you wrote my very story. I’m on the fence about getting a diagnosis but it’s a relief to know this is who I am and it all makes sense now
How interesting Danielle.I really relate to a lot of this.I was a solitary child with collections. I have an extraordinary sense of smell.I have to touch things when I’m out walking.For me I think I have autistic traits, which would not stand up to formal testing.My Dad was just like Tom who has an Asperger diagnosis.Pete is like me in many ways, and I feel that two people with traits have made one person with a diagnosis(I’m aware that is not very scientific!)As far as your questions are concerned-what do you think, what do you want to do?Yes if I just read this not knowing you I guess I’d have my suspicions!Is this something that is affecting your life or do you just think, it’s just the way I am?I don’t know, but I do think it’s fascinating.
Thank you so much for commenting. I am not sure what I want to do. I think my nature will mean I will obsess over it if I do not at least investigate it a little! But on the other hand I am not sure there is much that will come from it that will help me at this stage. I need to have a think 🙂
It’s a lot like reading about myself and I was diagnosed autistic in February this year, four years after my son was diagnosed at the age of four. Reading your post, I think you already know you are autistic. Many adults find out they are autistic after their children are diagnosed and it’s only then that their own problems make sense. If you’d like to ask me anything, do feel free to mail me.
All the best. X
Thanks ever so much for your advice. I began to suspect about 6 months ago I think. I am honestly not sure if I have enough traits to be certain, but I am certainly much closer than I have thought in the past. I think I have enough to at least mention it the next time I see someone relevant. Thank you again – I might take you up on that at some point! x
You have always been overly sensitive to all things, studious, a quiet child, extremely well behaved (mostly) clever, opinionated, hard working, creative, not overly affectionate as a child but learned quickly and extremely well as a wife and mother, you have many of the traits of your family and upbringing, – crazy sometimes , aggressive, very emotional sometimes, I wish we had the chance to do it all again knowing what we now know. Possibly you might register on the autistic spectrum, you certainly have all the great and positive attributes and you can manage very well some of the tougher elements that are generally attributed to this ‘condition’?. However, this can be said of many people, we are all a little ‘mental’ at times, we all have our own moments of greatness and rapture also….dont look back, keep doing what you do and forget about labels, you are a gifted, sensitive and strong woman. And loved by all.
There are definitely pros and cons to worrying about it too much. Thank you. xx
I also ask the same questions myself. I always thought I was HSP, and I definitely have tons of sensitivities (mainly noise and touching things I think are yucky), but since my son was diagnosed, I can certainly see where both me and my partner could be on the spectrum. Not everything fits, but not everything fits with my son, either. I don’t know. But does it matter? I would never get a formal diagnosis for myself because at 50, it wouldn’t make any difference. What it has done though is accept the things I hated about myself – why did I always need to be so sensitive, especially to criticism, or angry for very little reason, for example. Now, I welcome it – it is who I am! A long look at who we are is never a bad thing, and it is great you are questioning who you are; however it doesn’t change who you are!
Thank you so much for commenting. I think there are definitely pros and cons to worrying about it too much. I am in two minds as, thought it would be nice to know for peace of mind, I do not think it can help me on s day to day basis – I have been developing those coping mechanisms for so long. Maybe it might help with accepting myself which I definitely struggle with!
Interesting reading this as I was reminded about my thoughts about our eldest daughter (who is not diagnosed) and a post I wrote about it a couple of years ago. She is also very sensitive and ‘highly strung’, very intelligent and struggling with friendships… in her I see lots of autistic traits, but probably not enough to be diagnosed. Her main issue (as was mine) is probably a lack of confidence but there probably are other things which set her apart from her peers. If our youngest wasn’t diagnosed, I wouldn’t have given it a second thought… but now I constantly worry that she may well just be much better at masking, as so many girls are. And for myself, whilst I don’t believe I am autistic, I do wonder if other people might think I am but are just too polite to say so! Anyhow sorry none of that helps with your thoughts particularly; I think you’re right to take some time to think about it more. At the end of the day, if a diagnosis would make you feel happier about where you’re at, then it’s worth having I imagine x
Thanks so much for commenting. I think it would make me feel better – but then on the other hand I feel like I almost want it to be true so that I have an explanation for things that cause me so much pain and feel so out of my control. As is often the case with these things, I wish there was just clear way to judge and a clear route of action!
Have you read NeuroTribes? I have 2 kids on the spectrum (4yr old girl – severe & 6 yrd old boy – mild) and it definitely answered that question for me. To know one’s self is to know how to navigate in the world. Despite what many others may believe are shortcomings (as they define a place on the spectrum) you are a successful person who has figured out how to live in a world that is atypical to you, and you did it without any help most likely. The only reason I even care to relate my own experiences that indicate a spectrum placement is to better understand and help my children in ways others could not do for me. Keep up the good fight, Autistics are people too and every parent of autism deserves to be respected not shamed.
A very interedting read… I would say that you probably have SPD. My son has just been diagnosed with it and from reading about it I recognise myself. I won’t seek a diagnosis though as they don’t even have resources to help my child and I have learnt to cope with it. I recognise in myself a lot of what you write about except the obsessions and solidarity… I crave company and am more likely to flit from one thing to another. However, I do become obsessive when I read. If I lived alone I wouldn’t put a book down! My GP told me (in a conversation not related to me) that most people sit on the autistic spectrum at some point. I think if you feel you need support or justification for the way you think and feel (this would be the only reason I would need diagnosis for SPD as I feel and act different and people tease me for it but mostly affectionately!) then I think you should go for diagnosis. If you dob’t need this then no point. Personally, I have no personal experience of autism other than via teaching but I think you have definite traits. I hope you feel at peace with whatever you decide to do x
Thank you. At the moment I am not sure that to do. Certainty always makes me feel better so I do not like the idea of it just remaining a possibility – that makes me anxious. But then the thought of not being taken seriously also makes me anxious. Typical! Thanks so much for commenting.
You sound so much like me too! I was diagnosed in my late thirties after reading* (*obsessing) about Aspergers in relation to a family member. I am highly sensitive in every aspect and as a child was told this was due to high IQ – I now know it’s SPD, which my daughter also has. I score 42 on the autism quotient yet most people are shocked when I reveal my ASD, which I rarely do now because I can’t bear to have more ‘you seem completely normal to me’ conversations. Also have Fibromyalgia, anxiety and other related health conditions which seems to be common in Aspie/SPD females.
I have been thinking the same recently!
I can’t decided if to seek help or if it’s because I’m now living in an autistic world to try and connect with my son!
#spectrumsunday
Thank you for commenting. I am still trying to decided what to do, if anything!
I have also written about wondering if I am also autistic. I think as parents we become so aware so I tune that we recognize a lot of the symptoms and identify with them so deeply we almost begin to feel it. I am also hyper sensitive, emotional and sensory sensitivities have caused me great difficulties socially and manifests as anxiety. I too believe I wouldn’t tick enough boxes for a diagnosis. I do think this gives me an insight into my sons life at times and I am grateful for that! #SpectrumSunday
I am starting to feel like I tick a lot more boxes than I thought I had before. The more I think about it, the more things seem to fit. Thanks so much for commenting.
Thank you for writing this. It’s really interesting. I’m illustrating and writing a picture book for girls on the spectrum at the moment and in doing so working closely with many girls and mums to learn from their experiences. I’m fascinated that the things they “obsessed” about and the intensity they describe it in is often so similar but so largely unknown! Books being catalogued and troll collecting feature often!
I wish you all the best in your journey of self discovery. Xxxx
Thanks ever so much for commenting. Do let me know about the book once you have finished. it sounds lovely! x
You and I could be twins. I have two daughters on the spectrum, and have always identified with them so completely that I sought diagnosis and the results were positive. But even if I hadn’t, I would have still known it.
That is really interesting to know – thank you. I am still a little unsure of what to do!
I think most of mums with children on the spectrum wonder that from time to time. I know I do. Girls are so difficult to diagnose, even now, when we were younger they really wouldn’t have had a clue. What I do know is that even if we only have some traits, that must make it easier for us to understand our children, and that can only be a good thing.
What’s holding you back from getting a diagnosis? Other than online. Also do you need one? If you know your ‘quirks’ are you happy or are you looking for help? It’s interesting to hear your observations. #PostsFromTheHeart
I think there are a LOT of parents – especially mums – of autistic children out there who are gradually realising they’re also autistic themselves.
I’m also one of them. For a long time I thought I ‘had a few autistic traits’ but after a conversation with my parents and husband I realised I’m actually almost certainly autistic. I’m looking into getting assessed.
I, too, have a degree in English. I, too, decided to go into teaching (though, I dropped out of my PGDE halfway through in the end). I see a huge amount of myself in your post!
Good luck. It’s quite an eye-opener to have this realisation.
#SpectrumSunday
I think it is interesting to find more and more things about females on the spectrum that really changes my perception and makes me question it myself too. I think if you do go for a dx then you should try to write down why you think it is the case before you go.
Since our 8y old boy move din with us (through adoption) and he is most likely to be on the spectrum (still waiting for CAMHS to finish) I can recognise more and more traits in me as well and I have been asking the same question myself. Granted, I lived in a few cultures so I don’t really ‘fit in’ anywhere anymore and as I get older I care less and less about trying to, I wonder if that’s the reason why I can not only sympathise with my son, but bond so easily as we understand each other so well…
I don’t have wisdom for you sadly (I could give you unsolicited advice, sure, but that would be disrespectful), but what I say to my son is ‘it doesn’t matter what box you are in, it doesn’t define you for one second. We are all unique and we are all happy in our own boxes!’ 🙂 #SPectrumSunday
Hi Danielle. It’s a tricky one. I can see traits in both my husband and I. Our reactions are not as extreme as our son’s though, and we don’t have the learning difficulties that he has (he goes to a special school). In order to make a decision, maybe think about what you want to do in the future. Do these traits bother you? Would they stop you from doing the things that you want to do? Are you unhappy, or just curious? Whatever you choose to do, the most important thing is to be happy and comfortable in your own skin. 🙂
There are numerous neurodiversity self tests on the ADDitudemag.com site. From Executive Function to AAD/HD which can present very different in women. And then there is also the little known ASD PDA type neurology that there is quite a bit of info available now. But it is not being widely recognised. Women and other cultures have indeed been overlooked with parameters being white male based in the guidelines previously. There is a wealth of information on the ADDitudemag dot com website. There are self tests which then refer you to seek professional advise for many neurological types if you fall into the symptoms range. Research and be aware that GP’s are not qualified to assess whether you should be further assessed or not. They must refer you if you have evidence. These fields health are way under funded so be prepared to persevere. It took me 15 years of not realising a Dr had overlooked my neuro type, but had actually written it on my file but did not explain as such to me – that I would have to be assessed privately to actually get any help. A lot of public health depts avoid treating these matters, we need to push as far as lobbying if we can manage such. Resources are so readily wasted by these public systems wilfully forcing us to be treated for symptoms rather being informed and aware what we have to work with. Ideally we could all have awareness of our own neuro type and neurology in general could enable us all to be identified on a broader human spectrum. Rather than the new normal of typical which simply doesn’t seem to be helpful to the broader population creating ‘other’.
Neuro diverse can be types that find it difficult to listen, focus and tend to dismiss or mask their struggles way more than is effective if we only had realistic support. The broader social impacts in society are costing us quite a bit and that waste in my opinion is unnecessary. I’ve written this in a hurry, so thank you kindly for bearing with my poor writing skills also. But I hope this makes some sense and is somewhat helpful to anyone who may need further information.
I think it happens a lot that once a child is diagnosed with autism and the family gets to understand more about the condition they recognise other members within the family as also having ASD. We’ve recognised that our son isn’t the only person in our family with autism although he is the only one with a diagnosis. My husband did go for an assessment last year but was told that he didn’t have ASD which was a surprise to both of us tbh. If anything it’s left us both feeling quite confused. My son is becoming more and more like my husband as he gets older – it makes me question whether he would get a diagnosis of ASD if he was tested as a 40 something year old in the future. I’m not convinced by the accuarcy and methodology in the assessment of adults with ASD who do not have additional learning difficulties. I’ve heard that getting a diagnosis can very much depend on where you are assessed and by whom. Is it robust? Sorry our experience probably hasn’t helped you with your current dilemma. Don’t feel rushed – there’s plenty of time to decide what to do, if anything at all. Best wishes. #SpectrumSunday
Would a diagnosis mean anything to you? Would it help in any way? If so , great go and see a specialist if not then Autistic or not you are an amazing person who has done so much to help others. That should be your label. Thanks for joining #postsfromtheheart
Fascinating article. Thanks. I saw it on Huff post. The toothbrush charger comment made me laugh. I’ve spent many a night, and sometimes day, tracking down buzzes and hums and ticking clocks that don’t bother anyone else. Used to think I had bionic hearing(!) but now I know it’s a processing thing. I relate to everything you wrote, so much so that it’s almost like, well, this is normal, right? But I know it’s not. I know I’m not like your bog standard female picking up her kids in the playground. Other mothers’ friendships baffle me just like school and university ones did.
My Dr refused to refer me for diagnosis because I’m not “mad, bad or sad” enough. The way I see it, the more of us that can describe what we’ve been through/go through and have that noted and validated professionally, it leads to more understanding and awareness. No one can know the true figures/extent if we’re kept silent. Good luck with it
It’s amazing how, when you deal with Autism daily, you look back at your life – partly to understand if their autism has come through your gene’s.
Like a number of comments, I am not sure if or not when it comes to me but I can certainly pick out a lot of key things. I always were solitary, I find it difficult to interact. There are many other factors I could add.
However, regardless of the traits I have and don’t have. I always think, I am where I am and I deal with what I need to deal with. It’s about the kids now and helping them progress through their life, the way I have gotten through mine.
You’ve put that so well AutismDada! I feel the same… In a way I’d like to know, if my differences would be enough for a diagnosis. But, I’ve got to where I am, and I don’t want to be ‘wasting’ resources that could be desperately needed elsewhere. If I thought a diagnosis for me would in some way be of help to my son, then I’d go for it. But for now, I’ll leave it. As you say, it’s all about our kids now.