I need family advise please

[mike]

I'm fairly successful and found have a good job that I've built around working alone. Everyone that knows me has had no problem thinking I'm weird my entire 30+ years. I have a family, lots of kids, etc. I've always had common AS issues without knowing I had AS but I've kept them mostly at bay or hidden. I feel there are hundreds of things I've never told my wife or anyone else because I don't even know how or where to start or why I would. For example, we've always gone out to the mall or something for the day and it's always been absolutely terrible for me. Nobody can tell because I don't have a lot (or any) facial expression anyway and I never realized the people I was with could someone not be hearing the million other conversations all at once.

Anyway, the last year has got much worse. Stress due to kids getting older, family life, work, money, etc have all made me a more difficult person to live with. Finally my wife pushed me to see someone, a few months later I'm in the ASD. It actually fits and explains a lot about my life.

Two problems I need help with.

First I don't understand why I'm getting so much worse so fast. I've started different medicines and they help and have side effects of their own. But it's still getting worse. It seems impossible but my hearing has improved and now I really can't walk into a mall because I can't keep up with all the talking and lights and the social process of shopping and talking to sales people. Aspergers can't get worse over time, people are supposed to deal with it better. The level of ocd, anxiety, sensory input, social fear, and inappropriate thoughts are skyrocketing. What's going on?

Second, most of my family thinks I'm full of it. They believe the diagnosis "partly" because I've always been a weirdo but they don't actually understand how I was fine a year ago now I'm crazy. They don't get that I've fooled them so long. I wasn't sad your dog died, I could not have cared less. I said I was sad because thats what people say. Anyone dealt with this?

Mike

 

[poey]

I don't really have any advice, but since finding this forum after seeking answers, i've stopped trying to pretend everything is ok. I've come to accept that i can't handle malls, or places with lots of screaming children. I think after realizing it was OK to actually express my discomfort, i noticed other areas of discomfort that i'd been keeping hidden.

 

[Dragon's Tooth]

To address your first issue: We all go through ups and downs in life. Even if we have years to prepare for the diagnosis of aspergers it still takes time to adjust in our minds and to accept it. I was confident of my diagnosis for about five years before I asked my psychologist to diagnosis me. Even still I had to go through an acceptance process even though I was 99% sure I would receive the asperger's diagnosis. It took me about 6 months to process this. Probably didn't help that I had some negative influences in my life at the time but I still had to come to terms with that positive tick in that box.

I think you also become a bit more aware of things and your more willing to share. I certainly feel that some things I kept hidden I did so because I didn't really have an alternative explanation for until the diagnosis and I was always afraid if I told someone then I would have a negative result. And some things I have found out are related to the diagnosis because once it was confirmed I started to seek out answers and I have learned so much about aspergers and how much it influences my life. It feels like its getting worse but really I'm just more aware of things. Like my hyper sensitivity to lights, loud sounds, large crowds of people. Before I just used to push it all aside and away and try to hide it but now I feel more comfortable talking about it.

The second concern: For extroverted people it is very hard for them to understand how we regenerate energy from being alone. Extroverted people cannot imagine being alone. That would be the worst thing in the world for them. So they find it extremely difficult to imagine what it is like to take energy from being alone when they are used to getting energy from other people. Most people in this world are extroverted. Introverts are a much smaller minority. The human species would not have got this far if we were the opposite way around.

Also a lot of people who have not experienced mental illness cannot comprehend it. Mental illness is something you have to experience to understand in my opinion. That is why I have learnt to be very open about my own mental health issues. There are a lot of people who cannot comprehend the extreme feelings that go with mental illness. And by talking about it I hope to achieve a sort of education of people.

In my experience also those who suffer mental illness are very very good at bottling it up. Or hiding it. I'm pretty good. I tend to hide the outward signs of a downward spiral until I'm alone ie my husband has gone to work. So outwardly there seems like there is nothing wrong but inside its like a hurricane. Chronic suffers of mental illness I believe get very good at appearing normal all the while their minds are being torn apart.

I have had a lot more understanding for my mental illnesses because I come from a family that is pretty retarded in that department. the latest one at present is that the asperger's comes down my mother's side of the family (my grandfather I'm almost 100% sure is an aspie, my mum suspects strongly she's an aspie and I'm inclined to believe her) and my dad's side there is bipolar or something. So I come from a mentally messed up family so we can all understand that its not easy in that department.

What you might find is that your family themselves might also be struggling to cope with the diagnosis. They have to accept and process that a family member is on the autism spectrum. And when most people think autism is all hand flapping and non communication it could be very hard for them to deal with that themselves. I personally would learn all I can about the diagnosis then try to educate on the situation. Or I would ask that my family comes to counselling with me so we can deal with it all together.

Think about it from your kids perspective for instance. Imagine if the kids at their school found out that they had a parent who was on the spectrum. Kids are not kind creatures so they might be trying to process it in a different way and them wanting you to snap out of it could be their own defensive mechanism.

I'm only guessing here from the small amount given on the situation. I hope it helps though.

 

[rhubarbo]

Dragon's Tooth said most of what I would say. I'd suggest reading that a few times, and then again.

The only thing I'd add is a few things I have noticed. I was diagnosed about 4-5 months ago and am in my late 30s. For me the diagnosis itself was a major shift - like a minor identity crisis. There's just so much to take on at once - your past, whether to tell anyone, the voracious need to work on this new thing now, etc. - all that stuff comes at once. It did not take long for me to realize that the only thing I need to do first was simply get used to knowing this information. No actions are immediately required except to let it seep in - work toward accepting this new reality. It will take a while to digest and there is plenty of time. Because of the stress of trying to take on too much in those initial weeks/month I also noticed that just every symptom rise. Looking back it was a toxic mix of fatigue and stress caused by all I mentioned above. For now be on one of those air filled lounge chairs in the pool: Float more, steer less.

In time, when you are ready, things will get better. All will get better. When the family sees these improvements and you feeling better there will be no need to try to convince them of what they see with there own eyes. It's right.

 

[mike]

Thank you everyone. For all these years I really thought I was doing great and just happen to keep having people around me that where nuts. Those crazy people and their crazy fake signals they think they are sending. It's very confusing to realize they where right the entire time and I'm there really is a secret world of communication I can't see