Have you ever felt the need to change circumstances after diagnosis?

[CloudRomy]

I have told a few people about my diagnosis of Asperger's and for the most part they have been compassionate even if they don't 'get' it. However I have not felt supported at my church. Yesterday I was asked many questions by someone who clearly didn't get it. It seemed they had some limited knowledge of autistic disorders and were questioning my diagnosis (I was officially diagnosed by a very well qualified and experienced Consultant Psychologist). By the end of the conversation I felt very bad indeed. I had got hooked into trying to explain so they would understand but should have brought the conversation to a speedy end. There is another lady who I thought would be supportive but sadly this has not been the case. I may be completely wrong but I fear that they have been talking and I am feeling judged. It has really made me feel that I don't want to go back. I am thinking of giving it a break and finding another church where I can just sit at the back and be me. It seems to be a tough situation when people have known you prior to diagnosis. I always did my best to appear 'normal' but that has given me difficulties now. I just want to be me and be accepted for it, I don't want to keep pretending, trying to fit and completely exhausting myself every time. I am in a process of coming to terms with who I am and accepting myself. I find myself constantly confused by trying to work out what people's intentions are, at the moment I just want a rest from the constant whirling in my head and the best answer seems to stay away.

 

[Warmheart]

Expectations of external validation can send us for a loop regarding disclosure. Yikes! It's an uncomfy feeling. In the rare instance when disclosure is an absolute necessity, it helps me feel calm and grounded when I don't have any expectations of the other person's reaction. I don't need the external validation, and the other person truly does need to be able to feel and respond with what feels authentic to them. That's okay. I'll answer questions, and be supportive of however they respond.

Time helps us feel more assured and at peace with ASD, and we can use positivity and kindness in supporting others who may need to hear our disclosure.

 

[Naturalist]

I have found that most churches are wonderfully supportive communities... but only for people who conform to their ideas about what others should be. Sorry for that gross generalization but I have attended lots of churches, in many denominations, over the years, and they all have their own definitions of who can be in the "in group". This also means that if you find yourself defining your identity in any way which is unusual or confusing to their perspective, they will try really hard to convince you to try to discount your own understanding of yourself, or to be someone you are not. I found only two exceptions to that rule, so it does not surprise me in the least that you are having a difficult time finding acceptance at your church. This is sad, because if churches fulfilled the spiritual mission they purport to advocate, they would be the most accepting and supportive communities anywhere.

That said, it isn't just at church that we have to deal with this. I don't know how to deal with people at work but I dread trying to explain myself to anyone because they already act like they know better than I do about most things; the up-side is that my boss knows and understands my position, and mediates for me, and my students just think I'm weird "in a fun way" . In some ways I am tempted to use disclosure as a "litmus test" to weed out the people who will support me from those who won't bother.

 

[CloudRomy]

Yes, I read somewhere about using it as a 'litmus test' (in 'Been There, Done That. Now Try This' ed by Tony Attwood) but one would have to be very brave and be prepared for emotional repercussions. One of my troubles is that I make preconceived simplistic judgements e.g. they are a doctor/teacher/minister etc. so they must be nice etc. and my logic can be way off. I then feel really shocked and upset when things work out differently. Frustratingly I continue to trip myself up with this even though I have learnt differently. Plus I don't want to assume the opposite about everyone. I seem to have an inability to accept 'grey' areas.

 

[Judge]

IMO any institution which places a very high premium on teamwork or fellowship is potentially going to be challenging and/or problematic for most any person on the spectrum of autism.

Frankly these are the sort of institutions where keeping your autism to yourself will always be in your best interest.

Yes- seek another church and let them accept you as you appear to be...without explanation.

On a very personal note: You don't have to belong to any church or religion to be at one with God.

 

[On the Inside]

I understand your need to let go of appearing normal, to just be yourself and be accepted. My old therapist warned me about how a diagnosis like this often leads to confusion or disbelief from people who have known you all along as your normal acting self. They are unaware of the struggle you've had in fitting in, and when you let go of that struggle, it can be disorienting for them. Shouldn't be much of a problem, but we can't control the reactions of others.

This is why I've kept my diagnosis largely to myself, it's been difficult enough working things out and coming to an understanding with my partner, let alone people who don't know me as well. I have been slowly acting less normal around friends, family and co-workers, letting out bits of symptoms and traits, and saying that I have trouble with whatever that symptom/trait deals with. I hope their concept of me evolves without me having to wave a banner in front of them. Then maybe I'll tell them that I'm an Aspie.

 

[Progster]

I'm very cautious about disclosing my diagnosis to anyone, and tell people on a need to know basis - and it's rare that I really need to tell anybody about it. You never know what people's reactions are going to be - some people are accepting and want to offer support, but others are judgemental and predujiced. Personally, I wouldn't tell anybody unless it were really necessary.

 

[CloudRomy]

Thank you, your replies have been helpful and made me think. Along with diagnosis came the realisation that I cannot seem to trust my judgement regarding communication with others. It is so frustrating. I ask myself whether these things are just my perception and I have it all wrong. Have I been unfair etc.? I then chop and change my mind about a given situation and find myself stuck in being able to make a decision to resolve it. I am confused about my own feelings and thoughts as well as muddled about the event that got me in a spin and it gets out of proportion. So at this time I'm still not sure whether I will go this week (part of the problem is that I am involved in the service and can't just miss a week without letting people know). Usually time helps but it can be a real struggle until the fog begins to clear.