New Guy With A Question...

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Hi everyone! This has taken me a long time to pluck up the courage to post on here, and I'd be lying if I said that I wasn't feeling nervous. But here goes...

Around 5 years ago, I was diagnosed with ADHD. This was something of a shock to me, especially because of my age (I am currently 43), but it did explain at least some of the challenges I have faced since I was a child. I had originally suspected that I may have Asperger's Syndrome, but was told that there was no way, because I was "too smart" and "too sociable". People who know me generally think that I am a little 'different', and are often baffled by my unusual abilities, including being able to decode complex information, as well as some crazy maths skills. But most people have no idea of the sheer amount of effort it takes just for me to feel 'normal' and to fit in. It can be truly exhausting.

Like many of you, I have learned to mask most of my symptoms to the point where I can 'blend in', and this has become an important survival skill. But I still struggle on a daily basis with social interactions, as well as being able to follow instructions and to get through the day without people judging me for constantly making silly mistakes. Sometimes I manage to get by without drawing too much attention, other times I get stumped by the simplest of tasks (usually when I've misunderstood something), which makes me want to hide myself away. As a result, I often try to avoid people.

This is not always easy however, because I am also a single parent. I take care of my two youngest children by myself (they are 8 and 13), and they have zero contact with their mother. She lost interest around 18 months ago due to my youngest daughter having complex care needs resulting from a very rare genetic disorder. My children are actually doing really well, but they also really miss their mother, and so things can get a bit tough at times. I think that the fact that I have to work so hard on myself has actually helped me to be a better parent, but it doesn't always work out the way I would like. There are times that I wish I could be a little more spontaneous with my children, or that I had a bigger circle of friends, which would result in more options for all of us.

I have recently taken steps that will hopefully result in my being properly tested for AS. After years of doubting myself, I am now 100% certain that I have asperger's. As much as I have tried to convince myself otherwise, there is just too much evidence for this not to be the case. More importantly, my youngest daughter shares many of the same traits and behavioural quirks that I have spent a lifetime trying to mask, and so it is very likely that she also has AS.

And so, my question to all of you is this. Once I have reached the point of finally being given a diagnosis, both for myself and my daughter, what happens next? Does life get easier after finally being told what you have always known? I would very much like to hear from some of you how this important step impacted your lives, as well as the lives of those around you. More than anything, I am hoping to discover that perhaps I do fit in to this impossibly complex world, and that interacting with others doesn't always have to be such a monumental task.

Should I have posted this in a different part of the forum? I spend a lot of time by myself, and I feel sad that nobody wants to say hi

Hi! Midweek can tend to be slow here. It's indeed sad when a spouse bails on you due to having a special needs kid.

Hi

My life did not get easier. I'm not working, and am struggling in many areas. I've found a therapist to help me so that I can find ways to work around the issues I'm having.

But it's not any easier yet, because I have a lot of things to learn and it's going to take some time. It actually has made some things harder, because now that I know why everything is so hard for me, I feel that I was cheated out of my life.

I never had a chance to overcome most of my problems, because I didn't even know what they were. And now here I am, an adult who is so behind in life, and I have so much to do.

I'm actually really overwhelmed by it all, to be honest. I am glad that I have an explanation, but it didn't make my life magically better to know.

The hardest part is having to do everything on my own now. Managing my daughter's behaviour can be truly overwhelming at times, especially because of my own limitations and my less than optimal 'life skills' (completing daily tasks is far more complex than it should be, other people make it look so easy!) Also, not having someone else to share such a huge responsibility with can make the world seem a very lonely place. This also has a big impact on my 13 year old, who has had to learn to cope with regular 'meltdowns' and highly demanding behaviour from her younger sister.

And so my main goal is to continue to build up new coping strategies that will help make all of our lives easier, even though this often means going WAY outside my comfort zone. At the end of the day, I have to make the best of a complex situation for the sake of my children, because I am literally all they have. This is my main motivation for seeking a diagnosis at present, both for me and my daughter.

Do you think it would help me in my situation though, especially because I have kids?

But I hear what you're saying about feeling like you're behind in life. There's a ton of things I wish I'd done that I haven't, and sometimes even the thought of knowing where to start makes my head spin!

I think that if it will help you to better understand yourself and your child, it will be useful.

You seem to be doing okay with life in general, but are struggling with some things with work and with socializing. I think if you received a diagnosis, you could learn better ways to cope with these difficulties, and perhaps overcome some of them.

I think the situation you are in with your children, and your children's mother would be hard for anyone. I'm not sure whether a diagnosis will really make things that much easier in that respect. Those are just really hard things to deal with, and it's going to be a struggle at first regardless.

If knowing why you are the way that you are will give you peace of mind, then it's probably worth it for you to try to find out.

Thank you for your response.

In terms of doing okay, I think it's more a case of coping because I have no other choice. I don't have any close family, and I have very few real friends, and so I am seriously restricted in terms of options for my children (I never usually have any 'days off')

This is what makes my situation extra challenging. I have learned to 'socialise', if that's what you could call it. But I find it so hard to maintain friendships, because of my lack of understanding of the rules of social interaction. Most people tend to avoid me after not too long (because I can be quite intense, and because I try too hard to please everyone), and so I end up back to square one. This has a serious impact on my children, because they tend to socialise only during school-time, and the few friends that they stay in touch with are quite often busy doing other things.

I do agree that a diagnosis would give me peace of mind, as well as something of a fresh perspective. Not knowing why has been the hardest part in all of this. I think that in order to get to where I want to be in life, I need to fully understand where I am right now, and also how I got here.

I have no friends, and one thing I'm going to try to learn is social skills. I'm also going to work on methods to get around my issues with executive functioning, and to help my chronic insomnia and sleep difficulties. I think that I'll be able to improve a lot of things over time.

You could probably benefit from being taught some ways to improve your social skills and executive functioning. Have you received therapy for you ADHD? If so, they should have helped you to work through some of these issues. There are some similarities in the executive functioning problems between ASD and ADHD.

Sadly, the only support I was offered for my ADHD was medical, and after reaching the legal maximum dosage of Concerta XL (108mg per day), I had to come off of it very quickly because I was getting very strong heart palpitations. The route I'm taking for my AS diagnosis (if successful) should hopefully result in a great deal more tangible support.

All of the coping strategies that I have used so far I have had to develop myself through trial and error. And it has taken me years of very hard work. I still have a long way to go, and so formal therapy/support would be really useful! The same applies for my daughter, especially when it comes to things like danger sense. If I'm not watching her carefully, she will sometimes skip across busy roads and into oncoming traffic, because she doesn't 'see' what's around her when she zones out, which is quite often. She has very strict and highly repetitive patterns of creative play, which she likes to engage in on the way to and from school. But whenever she does this, her situational awareness literally shuts down.

I find that I too have a hard time maintaining friendships due to intensity. I don't do shallow well...and a fact of life is that most people want "shallow" in a friendship. They want to talk about the weather, or kids' sports teams, or whatever. And then we have me...who can give the weather a token comment but would rather discuss things like history because it's a special interest, or at times speak in quotes from books and poetry because I have a hard time putting words together in my head sometimes...and the bottom line is that I come across as sort of weird. Or nerdy.

I do not have an official diagnosis. I don't want it following me around on my medical record because, while no one wants to be discriminated against, a fact of life is that autistic people are discriminated against. Mostly unofficially in ways one cannot prove. I have a diagnosis for one of my children because we needed to find out for schooling purposes. If I had to do it again, would I pursue it for him? Not sure. Probably, because for him it helps with getting him needed help. But I am a bit sorry to have it follow him.

For myself, having learned to function in the world for 37 years, I don't want the diagnosis following me on a medical record.

I find that knowing how and why I have these difficulties with social settings and executive function helps me to troubleshoot when and where I have problems. Even an unofficial knowledge of a likely diagnosis gives me some peace. Before knowing anything about autism or aspergers, I assumed I was a defective person but didn't know why I had such difficulty. I can extend some grace to myself when I have problems instead of mentally beating myself over the head each time I make a blunder.

I have found a therapist who is knowledgeable about autism and she is a great resource when I have a situation I can't figure out and need another set of eyes on it. I don't see her often, but it is a comfort to know I can call her and set up an appt if I need to.

I have my difficulties, but I feel like I have learned to function as well as can be expected for the deficits I have. I will never come across as totally normal but I can hold a job, take care of my family, not drive my husband too crazy (we had some rough times before learning how to live with some of those aforementioned deficits and difficulties) and maintain a few friendships here and there. I am ok. I have accepted that I will never be quite like the rest of the world but I like the person I am.

I think that is the best place to come to...recognize your strengths and weaknesses, work with them as best you can...and give yourself some grace to be different. It is easier said than done sometimes, though; but not impossible. It took me awhile to get to that point.

Hope this helps.

Gkk7z, your daughter sounds very much like my youngest son. It is exhausting trying to anticipate all the dangers that he may walk into. It has gotten better as he has gotten older, but I still have to stay one step ahead of him. He still sometimes finds potential dangers that I have not anticipated to warn him of beforehand.

I would suggest some books on managing ADHD, through coping strategies. I don't think medication works for everyone.

I doubt highly that any medication would help my executive functioning, as it's of a different type than what those with ADHD tend to experience. I'm going to work on finding some techniques to remember to do things, get things done on time, manage multiple tasks, move from one task to another, get things started, finish what I start, etc.

I think you could use some support for your daughter. That sounds like a really difficult situation. Do you need to have a diagnosis before starting therapy? I would think you could start to work on these things right away, without waiting for a diagnosis.

Welcome to WP!

Hey gkk7z welcome.

Thank you everyone for making me feel welcome, and for your kind words