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Trying to decide if a diagnosis will benefit or not.

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I have just joined as needed to be able to communicate with other people who are not going to react with disbelief and denial about autism. I have spent 15 year working with young adults with autism and learning difficulties. We decided to foster now our own children are older and began fostering a child who is very intelligent and also autistic. I did some research and courses as I had no experience in this area. I have for the last 10 years believed my daughter had autism but as it didn't affect any areas of her life as we created coping strategies, until uni, did not believe she needed testing. As part of my research I decided to buy the girl with curly hair book, read it and pass it to her to read. This was 10 months ago and during reading it I had a major melt down lasting days if not a week as I realised I am also autistic, this had never occurred to me as a possibility before. When I spoke to my family about it after writing list of my traits the only supportive person was my daughter, who is a speech therapist, she said she knows I am and didn't know how to inform me. My husband, other children, parents all believe I am talking myself into it by researching and reading too much, it makes me feel as though they believe I have a mental illness. I am 43 and don't feel I need a diagnosis for myself but am thinking I need it to be taken seriously. I realise I have become a master of creating coping strategies to get me through life, this does cover up my traits. I am trying to understand my reactions to different experience and to recognise when I am becoming to get stressed so I can act to hopefully prevent major melt downs.  I am struggling with comments mainly from family members that I have confided in who can’t hold a conversation with me without throwing the Autistic comments at me, If I had known how they would react I would have kept the knowledge to myself. If I get a diagnosis will it give them more ammunition or will they support me? I was diagnosed with dyslexia in my mid-twenties and thought this was what made me different from others that was until the book. Sorry for waffling on has anyone else had issues with family acceptance?

hello rizzo

i am autistic.

i have had negative family reactions too, albeit a little more extreme. personally, i regard this as their issues, not mine.

moving on to your family - there could be several issues as play here for your family; one of which is denial. i think that because you are evidently intelligent and have these coping strategies, everyone around you has formed an idea of who you are and your personality. anything that changes that can be challenging for others as it makes them reasses the role that they assign to any given individual based on their own needs, rather than the individual's. often, role assignment plays a part in social structures and functionality, and by having to reassess, or adopt new information about a person, can result in negative attitudes, denial or lack of support for that individual.

as regards to diagnosis i would say this: do what makes you comfortable, firstly and foremost. speak to your gp in the first instance and explore your reasoning with your gp. your gp is there to support you and your wellbeing. then decide from there what your would like to do, for yourself.

i can offer nothing more than this, other than, you are not alone.

Hi Rizzo

My family have thought I was on the spectrum since I was 18 months old. I was diagnosed just over four years ago when I was about to turn 16. I know that my family are secretly ashamed of me...they say they're not, but they are. They seem to think I can't read body language or facial expressions or interpret meanings of little comments here and there, but I can. At least, I've picked up their shame.

I'm really sorry to hear your family are throwing "autistic" comments at you - there is nothing much more horrible and offensive than that when you're going through these thoughts about yourself.

To be perfectly honest with you, diagnosis has harmed me more than done anything good for has broken me emotionally. I found the diagnostic process humiliating and stressful and painful; it really was not easy, I was made to feel about an inch high and like I was a lesser person, and I still believe that I am a lesser person. I think if you were to go forward with this, what you'd have to prepare yourself for is that...people think if they get diagnosed they will automatically get support afterwards, and this isn't always the case. I didn't have one minute of support after my diagnosis - my parents and I were literally just told to "Google it." Every day I wake up and believe I am a defective person because of this diagnosis. It might have explained things but the truth is that I am in much more pain as a result of this explanation. With regards to your family, I feel that my family will never see me as any more than an autistic person now, so I do think it is something you have to consider, especially if your family are already making digs at you and showing their ignorance on this subject (I'm absolutely not saying they're ignorant people, but it seems like you have tried to confide in them about something very personal and they haven't responded particularly well, so...).

Getting a formal diagnosis will be helpful, especially if you have problems at work. Not having one meant I wasn't able to get the support I should have had in a previous role and that ultimately resulted in my resignation from it.

Hi Rizzo

I can understand how you feel.

Whatever the results of a formal diagnosis, it will not change who you are.  If you are autistic you will have always been so. And you will always be so.  Nothing could change that.

However, my diagnosis helped me explain so many things.  The only regret I had about getting a formal diagnosis was not getting one earlier.  I had problems throughout my life, without being able to explain them.  Why did I do the things I did?  Why did I say the things I did?  Why was I looked on as some sort of social misfit?  Why did I misunderstand some things yet I was an intelligent person?  And trying to understand without knowing caused such a lot of anxiety and depression.

Once I realised I may be autistic things started to fit into place.  I had suffered major problems at work due to changes outside my control.  And trying to explain this to people who did not want to know, who thought I was making things up, was more or less impossible without having the diagnosis.  Before I was diagnosed I was thought of in the same way as someone who watches a medical programme on television and then thinks they have all the diseases mentioned.

Like you I had become a master of playing a part in order to appear normal. But then when there was no script for the play I was in, I made major faux pas.  I didn't realise why people were laughing, so I developed some sort of character for myself that people did not really take seriously, that behaved like a character in a situation comedy, complete with the smart reply.  Only sometimes this was not what people wanted to hear.  Especially at work.

I realise how difficult it must be with family members who perhaps know little about autism except what they have read in the papers or seen stereotypes on television or in films.  Autistism affects everyone differently.  And your family members might be trying to make sense of the way you are.  I think that they need some information from an informed source to help understand the way you are.

The psychologist who assessed and diagnosed me was extremely helpful.  He produced a document to help explain how I was affected by autism and this was such that I could let anyone read it in order to help explain things to them.  It saved a lot of embarrassment on my part when telling others that I was autistic.

For me, I want to be treated 'normallly whatever that is.  But I would also hate it if people who kniew of my autism failed to recognise that it does cause me problems. So the fact that family members are making comments about your autism may in fact be a good point, even though the comments at the moment seem to be at your expense not in order to help you.  Being autistic is a natural part of you, just as much as physical aspects are.

I am in the fortunate position that I have had terrific support from a local autism support group, but I had to search this out myself.  The help I got is mainly associated with work (without which I am sure I would have been dismissed, not for being diagnosed autistic but because of the way I seemed incompatible with their way of doing things.)  My workplace is now beginning to understand the problems I have, and my colleagues have been very supportive.

I now embrace my autism, and am no longer afraid to tell others I am autistic.  And family members should be understanding of your condition and that it is not something that has suddenly happened to you. Talking about it without embarrassment in a matter of fact way will help promote understanding of your condition.  When others realise you are accepting of it, the chances are they will accept it too.

Autism is nothing to be ashamed of.  It is you.  That is what you are.  and if people cannot accept you for what you are, it is them that have the problem, not you.


Thanks to everyone who replied you have all been a great help and comfort to me.

I do feel a diagnosis would not be for me but for the people who know me but don’t know if it is worth going through the process which may be a negative experience to prove to other people I am autistic.

I have never felt accepted but don’t know if a report would change the way others feel about me or respond to me.

My husband has worked for many years with children and young adults who are autistic and have profound learning difficulties. We have been married for almost 25 years and he had always described me as heartless as I don’t get emotional and I have always had major incidents over the smallest of things, but to me they are huge and if not put right cause such anxiety that I cannot cope. I’m putting too much strain on my husband I guess as I am analysing my whole life and what I did at different stages ,which is not an easy ride as I have blocked out so much as it was not a pleasant experience, but everything I have recaptured all points to the same result. My husband has now acknowledged that he recognises my traits but until a recently was unable to offer me the support I needed when I needed it such as no talking or touching. I have had many heated discussions with him over the last few months wanting to know why he can support our foster son who is autistic but why can’t he be as patient with me. I’ve reminded him I haven’t changed and given examples the only change is I understand why I behave the way I do. I do recognise that he is trying, yesterday he bought a plant pot and just left it in the kitchen for me to absorb and get used to, I think maybe he’s starting to understand I don’t like surprises as He is always upset by my response. My eldest daughter works with the same client group myself and husband have worked with and she is very supportive, she tells me when I am repeating myself, talking too loud, when I need to let others speak as well as when I am being intimidating but does this in a supportive way. My eldest son has also worked with a child with autism but has no empathy, I don’t think he realises how hurt I am when he comes home from work and asks things like what have you self-diagnosed today.

I have recently changed jobs as couldn’t cope with incompetent managers after spending 2 years trying to get them to understand what they were doing wrong and that what they were asking staff to do was not in the best interest of students’ progress I decided to leave. Before leaving I confided in a couple of staff I thought would be supportive One, a speech therapist, dismissed everything I told her and said everyone has autistic traits, this is the belittling response I am worried about if I try to get diagnosed. The other was very supportive and understands that females often are able to disguise their autism as her daughter has autism. I am much happier at work now I work for 4 clients and arrange my own hours and my client is my manager so I am now able to do everything in the best interest of the client. I did refuse 1 client and this was due to the fact I would have to always work with another member of staff and have decided I find it too exhausting communication with too many people at once.

I feel I am getting a grip on what is right for me. I have always had things in place for my sensory issues and am learning that if I feel uncomfortable to move myself from the situation before I become too stressed.

When I posted the original post I felt over whelmed and low but after your responses and now I am thinking in depth about the support I feel others are trying to give it’s just taking them time to readjust and understand what I need at any given time. I do think I need to be open with my family and explain how things are affecting me and what I need at that particular time which will not always be easy accomplished.

Think it will be work in progress for a while.


Reading your account is like reading my own, I burst into tears!

Your question is timely

I've posted a similar comment in the adults autism section of this forum.  I have many of the same concerns as you, though I have only mentioned my suspicions to my partner.  Fortunately when I presented him with the research I'd done he agreed with me and asked if I would want to go and be assessed.  That was a few years ago and I decided not to go for assessment.  

However, recently I have started wondering if I should be going for assessment and diganosis.  I took on a new role 6 months ago and have started to get my usual issues with organising myself and getting overwhelmed.  I felt that I should raise it with my team (one of whom I'm pretty sure has realised as she's also non-NT - we compared notes over breakfast about how we hated having the beans touching our hash browns, both of us ordered 'no beans' the following day as a result!).  But I don't know if I can raise it with my team if I haven't actually had anyone confirm the diagnosis.

But then I've read other comments about how other people treat you when you have the label, or that the assessment process was traumatic and I think 'is it worth it?'  There's also the possibility that I could be told that I'm not autistic.  As I'm now so sure I am, how would I feel?

I'm concerned that without the formal diagnosis that people will just think I've read a book and decided I am.  Also, despite my partner agreeing with me a few years ago nothing has changed.  He still expects me to be able to do things exactly like he does.  But I think previously I had been mimicking him and trying to do it that way to prove I could.  In fact there are some things that I really struggle with.  So recently I told him that I was really struggling with organising myself without a proper routine.  His response was that everyone feels like that and it's not an autistic thing.  So I'm now wondering if I wasn't clear enough about how much I was struggling or if he's right or something else.  Similarly if I say I don't want to go to a social event he tells me that people will think it's rude.  But then if I go and I'm not talking to anyone he'll tell me that I should have stayed at home if I didn't want to go.

I'm wondering if a diagnosis will change any of these things at all anyway?

The assessment process can be traumatic, but it will save you a lot of trauma in the long run. You will hopefully have an answer and an explanation for why you are like you are.