Happy for stories to be shared via PM if you don't want to publicly talk about it. About to start my own journey along this road (unless you want to do me a favour and give me a convincing reason not to lol) so would be interested and hopefully, comforted by hearing from other experiences. Answers are part relieving, part terrifying.
I was diagnosed with ADD a few years ago. It was a bit of a shock and took me some time to come to terms with it. I did some reading about it and it made sense. I read enough to understand a few of my positives & negatives, then just got on with life. I could have read in more detail. I tried some counselling, but on the whole didnt get much out of it. Also, I have ADD, I don't concentrate on stuff that doesnt fascinate me for too long ;)
it can be scary, but it wont change who you are already. It should just help you understand ways to work in the world.
My FIL was diagnosed two years ago. It has been terrible for the whole family, especially him.
Another friend was diagnosed recently at 42. I really felt for him, as it was scary, and as far as I can tell he hasn't really gained anything from it.
So not terribly positive, I'm afraid. But if you want to go for it, I'll cheer for you, and maybe you can be the one in three who has a great outcome from a diagnosis.
My dad and I are convinced my 18 year old sister has Aspergers. But we have no idea how to take the next step, especially with my mum.. I think in our family a diagnosis would be positive. In that she isn't just weird, if you know what I mean. Interested to know how it all goes for you :)
DH flatted with a family friend of a friend in uni. A guy in his mid 20's. I remember him as the introverted weirdo with no friends who had no idea how to behave around others (he'd ignore you completely if you spoke to him, walk into the bathroom while you were showering, didn't close the toilet door and displayed inappropriate 'personal habits' in public - ahem!) He spent all his time on the computer and ate the same foods every day without fail. We heard about two years after that he'd been diagnosed as ASD and his whole life had changed. He had a whole network of friends, had joined a choir, had other hobbies outside the home and was learning social skills. Apparently the change was remarkable and his whole family were stoked they now had a son/brother.
I'd say go for it. In my eyes, it would be similar to finding out you have a food intolerance...you can then adjust your eating habits accordingly and feel heaps better for it.
I'd like to share some questions that may be helpful to those going down this road:
How will the diagnosis change your life?
- consider access to medication to make you "normal", how a label will help others around you understand you, how a label will help you grow as a person.
What are the positives of a diagnosis?
- think support groups, job opportunities, a way of understanding yourself and how to adapt your behaviours when appropriate. And also a cast-iron excuse for the odd weirdness that does show that the "normals" dislike. Some people will find it easier to accept you when you come with a label.
What are the negatives of a diagnosis?
- think about the stigma of your "disease", both in that you are officially weird and also that people will expect stereotyped behaviour of the condition (eg "you're not as bright as Sheldon Cooper so you can't be like him"). Think how this will affect you socially (friends may not wish to be friends with an official weirdo) and financially (job prospects). Will the label make you sit back and say "I have a problem with being social" and not overcome that barrier? ASD (including Asperger's) has been used as an excuse to take children away from parents before in the UK, which for me is a negative. What if forcible medication came in to make you "normal"? I've been on brain-changing meds and I hated being "normal" and not being me: admittedly the meds were for another problem, and I never reported that side effect (nor have I sought a formal diagnosis) as I don't want to be forcibly normalised at a future date.
Is an informal diagnosis better for you?
- you may be able to understand yourself better and adjust yourself without people being on at you all the time because of your label and their expectations. You can read various books to help you cope with the "normal" world and no-one else need be any the wiser, save for those you wish to tell. (As an aside, many people I tell now are surprised as I can cover up pretty well, but when you know it is clear when I'm struggling and allowances can be made.)
How will the diagnosis affect those closest to you?
- will they struggle with the diagnosis, will they not want to know, do they prefer you being the "kooky chum" and don't want to know that it's an official "problem"? Will they embrace the diagnosis and help you grow as a person? Will they embrace the diagnosis then unintentionally trap you in a small box with it?
Thanks everyone including those who PMd, I'll get to it all I promise and really appreciate it.
That is sort of exactly the questions I'm wondering, the risk vs benefits. My family, partner and I are already satisfied with the fact that I am. My parents said they would have sought a diagnosis when I was younger because I had struggles at school and with anxiety but I've sort of grown into myself and developed coping habits to manage a fairly successful life. I think most friends see me as a little odd but doubt they would think to this extent, I keep friendships at a 'surface level' as that is where I feel most comfortable and at least risk of messing it up unintentionally due to my ignorance of complex social cues, rules and boundaries. But I feel okay with it all, I'm happy and enjoy life! It doesn't really hold me back but there can be difficulties say if I have an overload with social interaction I feel drained to the point I can barely keep my eyes open so often need a nap to recharge. I like the familiar, when I first moved out of home I would still drive to my parents suburb for groceries for example because it was the shop I was used to, I see the same doctor I have my entire life, change is very difficult for me and can require some hand holding exposure before I am comfortable transferring but I am motivated to so it does happen. I have a few sensory quirks like feeling comfort and safety in being compacted and compressed, finding certain light tones almost painful. I don't like different foods to touch on my plate, sometimes to the point of needing separate plates. I can't not tell the truth, it is like a compulsion where I just cannot leave words that are "wrong" out there which means I find it difficult to say just compliment for the sake of it and extends to wanting to correct others also, I am better at holding back now though (some might have noticed my compulsive post editing). Trying to fake emotions is impossible to me, I can barely get my face to accurately display ones I am feeling let alone those I don't and reading emotions in others is also tricky so offending people can unintentionally occur but this seems less and less of an issue as I expose myself by being upfront in not really knowing what to do in this situation, I find people are very accommodating when you are honest in your confusion. It is hard to place all the oddities because they are my normal and those close to me are all quite used to me being me. My partner and I seem to really work together and compliment one another, our years together have been my ones of biggest improvement (as well as becoming a parent helping me to challenge my comfort zones, they are such motivators as I would never want them to miss out). My partner is an extrovert, can make conversation (and does) with anyone and helps to ease me out there without feeling pressured, I dont still shop in my parents suburb for example lol.
What inspired my original leanings towards this is my eldest daughter who has been seeing a speechie who sort of suggested we think about seeking a diagnosis for her. I was caught off guard because my daughter couldn't seem more normal... to me. That's when my parents and partner started to explain that of course she seems normal to me,I'm odd too and then began the obsessive research which was making sense but then eventually I focused more on presentation in females and bingo, there was me and my daughter no question about it. At first I had a lot of misconceptions about ASD and when first mentioned it as a possibility thought well, obviously not as I'm bursting with empathy, I cry at others disappointment as much as my own but from reading I was able to clear up some of those connotations I had due to stereotyping and understand that being ASD isn't the same as being robotic.
So we go back and forth trying to decide whether to get one, both or neither of us an official diagnosis. My daughter does not struggle too thoroughly, she always makes friends at the park and such and I can manage small talk with their patents quite well too but I do see that she drops back into a following role and worry it could become a distrust in her own thoughts, trying to smooth over and hide her differences to fit in. I know life was very confusing for me growing up as a lot of it just didn't seem to make sense but as my daughter won't be going to school, I can help her as though she does have a diagnosis especially with my first hand experience so it doesn't feel pressing to have the label. Her kindy teachers can't rave enough about her; she plays with everyone, she's sure of herself without overbearing others, she's independent and motivated, keen to learn and get into new things so maybe we are doing pretty well in helping her be her. They are supportive of our homeschool plans and do see that it would suit her, they were going to suggest a small school before I spoke of our intentions because they can see potential for her to get lost in the crowd as she is so capable and agreeable.
I am worried about it becoming an excuse or crutch for either of us or furthering the potential for alienation. I am worried about it changing her (through extended therapy and OT work) as I think she is just brilliant as is and all I want is for her to feel happy and comfortable being her rather than altering herself to find happiness and comfort. I think if I got her a diagnosis I would feel like a hypocrite not to get one myself.
If she was having meltdowns or struggles it would be easy to say yes, we need a diagnosis to help here but she's not. She didn't even have a tantrum till she was almost 3 which my parents theorize is because her and I are on the same wavelength so I just kind of get her and read her very well. My youngest is 18mo and already tantrums, we are less intune with each other lol. So I'm stuck. When I ask her, she says she has no problems and it certainly appears as such. And I seem to manage myself too. We both have incredible memories which helps with adaptation and learning from the ground up. But we are definitely different and maybe the world would cope better with us being appropriately labelled as much.
And there is always that fear that maybe we don't have ASD and then what lol.
I certainly wonder about myself and have thought about investigating it further. Aspergers runs in my family with my Dad, brother, cousins and niece all affected. When I read about it I do believe I have a lot of the traits. When I look back at myself as a little girl in school, I have no doubt my issues were Aspergers related. I have read that females with ASD tend to adapt better than males - we learn to mimic until we find our own way. A few years ago I researched it in-depth and found myself in there. It was actually quite freeing because I realised I wasn't a bad person, it is just the way I am wired. It also helped me step out a bit and say at times "Am I being reasonable not trying this new thing?" and then giving that new thing a shot and finding it was fantastic. About 5 years ago my DH wanted to buy a caravan. You can imagine someone like me with ASD tendancies freaking out! I don't know what to expect if we go camping. Everything will be unfamiliar. There will be no routine. But then I realised that holding back would mean my DH and kids would miss out on lots of fun and adventures and that I needed to just give it a go. Before I knew it I was the one begging to go camping haha! We've had so much fun with it and it was worth stepping over that hurdle to experience it.
I would be genuinely interested in finding out if I have it, but I'm also cool not knowing. I am happy with who I am. My DH and my family understand me.
The only reason it might be helpful with your DD is to explain it to her new teacher each year? Then they can make allowances for her (with routine, etc.) and also understand where she's coming from?
It has definitely been freeing for my family and I to accept. It inspired a lot of introspection and growth as I could question my reactions and reject them more easily. It has also made me less fearful of rejection and failure because I understand why not everyone can get me which has made me more outgoing and led to expanding my social circle and experiences in great ways.
This isn't a concern for us currently as we will be homeschooling but should that change or DD1 request to go to school then we will probably need a diagnosis to help her and others relate. With kindy there does not seem to be issues as it is only a 5 day fortnight so lots of recovery/down time and there is a lot of freedom and self direction which suits her perfectly as she doesn't like to move on from things before she is ready/finished, she likes to explore things quite thoroughly and the restrictions of timelines and timetables will be difficult for her to abide by should further schooling be pursued.:
FWIW, I mention it to DS's teacher each year and it really depends on the teacher if anything is done about it. His Nursery key worker picked up on it around his second birthday and she was really good with him.
I've tried the "learn socialisation" books. Honestly? They suck. They really suck. Patronising and do not enhance my knowledge. I can teach Liebling better than books, and I do. We spend a lot of time with regular children's books figuring out what people are feeling and why they are feeling like that based on pictures and the narrative. It does help him - although he sometimes forgets to apply this to the real world when he's having fun. And I understand where he's coming from more than a specialist would. (I know an excellent specialist and she struggles to get me, and that isn't hard.)
Sounds to me like you are self-aware and know your limits. Once you know yourself you can start to extend your limits as you find comfortable, such as going to a closer shop with a list and a friend to help. WRT the truth, most people take "oh, new haircut" as a compliment. Even if you first thought "oh, ugly haircut". But it is new and you're not lying.
Interestingly, I would go camping if only I could guarantee the food. But I can't. So it's either eat out for every single meal or go with a caravan. I can't cope with not having a fridge. And in some cases, an oven. But the boys can do a boys camping adventure and I can stay home, so that works out well for all of us.
That's a good tip about compliments, thanks!
That is basically how we begin new experiences; I'll go to a place with my partner or parents and we sus out things like how to get there, parking, bathrooms so that when I go alone I can plan very clearly all those details that would cause anxiety if I was uncertain about them. I haven't come up against a challenge I can't conquer yet although a few places took a couple of accompanied exposures that is still a win. So it might take a little extra effort but there isn't anything I can't do.
We also do a lot of emotion recognition work with my daughter, not sure if it is helping but she definitely makes friends and doesn't appear to have much trouble in her interactions based on what I've witnessed out and what her kindy teachers have told me. DP and I do some practise reading each others faces also but we take it into a ridiculous direction of getting crazy and specific by adding a reason for the emotion. Fun game though.
I definitely think I can help guide and build up my daughter in an effective way as I know her so well and have been through a similar existence and part of me almost doesn't want us diagnosed because I think we would face extra criticism for homeschooling as though I am not opening her up to 'normal' people, sheltering her in difference and holding her back which couldn't be further from our intentions as we hope to expose her as much as possible to all kinds of people and experiences just in a way that would make the experience more comfortable and therefore beneficial. One of the things I love about her is that she will play with anyone; boys, girls, older, younger, dress ups to trains as she is so accepting and tolerating of all so we must be handling this whole concept of socialization pretty well so far. She will say hello to all others at the park as she feels it is polite to greet people who you are sharing space with. I only want my child(ren) to thrive which is what seems to be happening now and I just know exactly how I and her respond to feeling rushed and pressured which is to close down, so I'd like to avoid that obviously. That is what worries me about starting to introduce more health professionals and labels that they might lose sight of her and my expertise in my own daughter might start to be considered of less importance than the guidelines of a study.
What a diagnosis would bring for me is a sense of closure. That yes, I'm officially different and it isn't just in my head or me being difficult or weak or whatever. But I think I am okay without it because really, as long as those that care about me and I care about are validating and accommodating (and they are) then the rest don't really matter. People would judge and criticise me no matter what, a label wouldn't protect me and what I really need is to work on letting go of my concern over it rather than trying to find a shield.