Major Problems after Disclosure of New Diagnosis

[housemouse]

Hi, I'm in my 50's and was just diagnosed with High-Functioning Autism about 3 months ago. Apparently my Mom knew when I was a kid, but decided "not to label me with it". I was married off at age 17, had a kid at 18, divorced, raised the kid alone and worked for the next nearly 30 years, all while trying to figure out why I seemed to be the only alien in the room. I thought telling my very large extended family would clear the air as to why they think I'm so eccentric, but I was wrong. Not only have my brothers & sisters accused me of actually being a psychopath who somehow "fooled" the entire Aspergers Unit, but everything in my life has changed. I cannot have any contact whatsoever with any of my grandchildren (even the ones not living with my daughter). My entire family has told me not to contact them; some have even changed their phone numbers, email addresses and blocked me from facebook. Close acquaintances of nearly 20 years called to tell me to never contact them again. Our block's residents info page won't let me post anything on it. And now the blocks management company insists any repair or problem call be "verifiable" by "giving them the name, flat and phone number of another resident who will confirm the information". The Aspergers Unit said I am quite capable of living independently as I always have. What's going on? Why are people acting afraid? (Sorry this is so long)

[nippy sweetie]

My suspicion is that this multiple avoidance reaction is not related to your diagnosis but is maybe more likely to be due to the behaviours that gave rise to your being diagnosed in the first place. Your posting is surprisingly passive eg

I dont understand how you could have been "married off" at 17. Everything appears to be someone else`s fault. Can you think of how so many people might have come to the same conclusion? eg have you made lots of complaints to the maintenance dept of your block? What might you have said or done to your children to lead to their reaction?

The diagnosis of HFA is not in itself a reason for all these extreme avoidance reactions. I really dont want to seem mean to you about this but, equally, I dont want people with this diagnosis to feel that this might happen to them.

[trekster]

People can be really cruel when they don't understand. Ive a few family members who haven't changed their behaviour for the better following my diagnosis, they just wont accept how autism affects me.

Peoples attitudes to someone's diagnosis can be a reason for avoidance behaviour. Passive behaviour can be a result of conditioning by others.

 

Have you found any support groups in your area for autistics like yourself?

[Tanya52]

I’ve fund pretty soon after my diagnosis that it’s a package deal of assets/liabilities. When I explained to a couple of my colleagues at workplace that I’m straggling with understanding indirect language & metaphors they listened but didn’t modify their language to accommodate me. Have they taking it personally?

Lots of people don’t like being told about things how they are -on record. For instance some of my uni’s academic staff are “forgetful” but getting annoyed when I mentioned my personal support plan. It’s very difficult to negotiate about an appointment with them, always excuses of busyness.

Can we all be accepted (forget popular!) in our society for who we are? We think differently and we act differently but got judged by others as if we aren’t.

 

 

[trekster]

There are areas where we can be accepted but finding them is the problem. I know this sounds crazy but could he be grieving for his grandparents? There is some literature on autism and grieving and it sounds like he has angry depression. The proverbial self destruct

button has been pressed.

Edited August 15, 2013 by trekster

[Shnoing]

... I thought telling my very large extended family would clear the air as to why they think I'm so eccentric, but I was wrong. ...

I think they didn't want that information (which implicitly says that they treated you wrong all those years) in order to maintain their way of life/way of treating you.

I'd say telling them is a typical autistic mistake (being too blunt). I, for my part, did NOT disclose to my relatives.

What to do in the future, I cannot say.

[Gold MD]

Nice family.

 

They run like the wind and ignore you now. I say **** them.

[trekster]

There was an article in the New Scientist magazine 'Aspergers theory does an about face' which stated 'we have empathy but feel others emotions too intensely to cope'. This is where the Aspergers Unit is getting muddled. Also their idea of independent and yours are totally different. To me having home help isn't independence it is semi independence.

 

If you can download a copy of the 'taking responsibility' report by Andrew Powell that could have pointers to help you find the services you need. I found 2 copies recently whilst sorting out my books. National Autistic Society are doing an autism in maturity project for adults;

 

http://www.autism.org.uk/living-with-autism/adults-with-autism-or-asperger-syndrome/autism-and-ageing/about-the-autism-in-maturity-project.aspx

 

My family don't get my autism either they often react as though anything disability related is bad or wrong. I know what works for me which is why I keep up with my sensory vest, my carrying playmobil figures around, my running social groups in Bristol and Bath, my reading up on autism, my research on autism, owning my autism and having an autistic voice. That takes a lot of mental energy that is invisible to other folk which is why the Asperger service are misunderstanding you.

 

If you would like to meet other Asperger/autistic folk try googling 'your county + ASD social groups' to see what you can find. Are you currently studying? There is student welfare services which I found really useful when situations have gone completely out of control.

[marjoram]

Hi,

 

Re your block management's response. this is disability discrimination, pure and simple. I suggest you get in contact with Citizen's Advice, taking your paperwork with you, to show what they are doing. The Autism Act gives you rights and they are being abused - it is against the law.

 

About the rest of your family - they sound like a truly ignorant bunch. Perhaps you could post them some information about autism? The NAS Helpline will send you some, if you ring or email them. Then they might learn something upon which to base their responses. The sad truth is that many people would rather reject an adult with autism than take the time to reflect on the diagnosis and how that might explain past events and grievances. It has happened in my family too. Perhaps you might find better understanding from others on the spectrum.

 

I found that my diagnosis, when I was 50, caused me to look at my life and the people around me and ask myself, do I stay in contact because I like them, or because I think I ought to like them? Then I decided to use my new viewpoint, as an adult with AS, rather than as an adult with problems, to redesign the way I live, from how I decorate my home, to how I spend my time and who I am in contact with. It has not been easy, but believe me, it is a revelation. I know fewer people now, but I know them because I want to. And I am happier in my home and leisure time too. There are anxious and depressed times, but that is common to us with ASDs - the rest of the time, I am far more at peace with myself. A late diagnosis may be too late for your family, I don't know, but please don't let it be too late for you.

[Merry]

Hi. I feel so sad for you. I love Marjoram and Trekster's advice. It is such a shame you don't have advice and support from those around you, particularly those you love at a time when you obviously need it more than ever. Getting diagnosed is a life changing event, at least emotionally and mentally. I agree with Shnoing too, it doesn't seem like they want to know. Maybe it's something they can't deal with. I would need more info to understand what's happening in your block................but it certainly does sound like disability discrimination, as Marjoram said. How are you coping now? Housemouse, I have one thing to say: You may be eccentric, but no one can ever tell me that Autism isn't a positive thing. The world needs people like us! I hope you can get to the same point Marjoram described so beautifully, where you can look back and see how your life has changed and feel so pleased that you were born exactly as you are - Perfect at being you, happy with who you are regardless of what anyone else tells you and how anyone else treats you. They may be perfect at being them, but that's THEIR reality, and you have yours. I'm so sorry that your life has been traumatic in parts up until now. What Trekster said is a very powerful message.....that we feel SO MUCH empathy for others that it isn't easy to cope with the intensity. This has certainly been my experience, and from what you've written, I think you sound the same. The world definitely needs more people who feel that much for others, wouldn't you say? It isn't necessarily easy for our families all the time, but don't feel bad about any choices you've made in life which may from your own or other's perspective seem to have been unwise or troublesome. You were always just being who you are, and who you are is okay. If your friends and family don't accept you, you will have to find the strength to move on and build a new life.........but most people come around in the end. I hope they do. Do they know much about autism? You could try emailing them some info...... I hope you keep posting, I would like to hear how things are progressing for you since your last post.

With love and greatest respect.

[trekster]

To me autism is a neutral thing, I just happen to say things are how they are the right people will respect you for your honesty. T help me cope better with the world I gave up milk and gluten which has helped me to feel much better. I now find it easier to learn and remember things people have said to me. There are some really good books about autism around. Even literature aimed at younger audiences can be helpful in a way. Do you need help applying for disability and welfare benefits? I hope we can help you feel less alone in the world. ive had a few breakdowns and near nervous breakdowns in my life.