im new to online forum things so sorry if I shouldn’t be writing on here.
i am 38 years old and have always felt different, life felt like one big act which can be very draining.
Recently everything seemed to come crashing down and I have had a really bad 18 months, things are getting better now but my GP who is very understanding felt that I maybe autistic. This didn’t come as a surprise as it has been mentioned to me in the past, however after hospital visits and reading documentation sent I am getting stressed.
i have been online to learn more and am finding some are saying a formal diagnosis is a relief and others are saying it is the worst thing they have ever done. I am now scared, stressed and constantly worrying about this. I am hoping some others who have been through this can help me decide if to continue or stop the process.
any help would be really appreciated
thank you in advance
I have just been referred by my GP for a referral after a year of being a member on the forum and a self-confession self diagnosed woman on the spectrum.
I am seeking the diagnosis for myself, I take this as my personal journey...I am not doing it for validation or acceptance from others but for self-validation.
From understanding the way that I mask my behaviour and compensate for the areas that I struggle with on a daily basis was key to my understanding. Why at the age of 43 have I made that decision? I go to the point where my masking strategies were beginning to waver and as a result more and more of the autistic me became apparent.
I am proud of who I am and the skills and abilities that being on the spectrum affords me. Yes, the challenges can be frustrating at times though! It is worth holding onto to the fact that we are all made up of abilities and deficits and this is what makes us who we are.
Each of us unique, but certainly not substandard!
Welcome to the forum
I'm 59 and at the same point as you having been referred by my GP at the start of May - but that's when the stress and anxiety that you describe started to get worse.
In my case I was fortunate to find local "autism hub" meetings and going to those has helped me come to terms and accept the condition. In turn that led me to start using this forum both to ask and respond to others - and that has really proven to be a great resource. The simple ability to talk to people who "just know" (whether in real or online) is a great help.
Like others I need the formal diagnosis to help explain who I am and why I have felt different for my whole life. But also, by talking with others I can learn coping mechanisms or strategies for everyday life where the challenges are hardest.
My 28 year old son has just been diagnosed and I was over the moon as he finally now knows what it is after many years of trying to find out what is wrong with him. I say wrong with him because that is how it was looked at by the medical profession and himself. He has gone through so many different diagnosis's such as, depression, PTSD, Anger issues etc. When he was finally diagnosed and came out of the appointment he said he didn't feel any different other than he was angry that it hadn't been picked up on when he was a child as school was so horrible and difficult for him. As time has gone on he is now very glad of the diagnosis as he now knows what he is and can explain to people why he doesn't want to socialise with them sometimes, and why he seems strange to them. It is making his life easier and much more controllable. The best thing he has found is that he can now say, 'NO' to people and situations and not feel forced into being in a situation that he finds intolerable. All in all it was one of the best things to happen to him. He is a lot calmer and a lot more in control of his life now. As with you my son also prior to the diagnosis went through his life coming crashing down around him where he had to give up work also. Everything had to stop to figure out what was wrong with him. He actually figured out he was autistic himself hence going to the doctors to arrange testing. Now he is starting to build his life up again.
Only you can answer if you should continue or stop, I guess you have to figure out what would be the benefits for you to obtain the diagnosis and is it worth it? Speaking for my son it was definitely the best thing for him to do.
Thank you elephant in the room x
thank you for replying
reading the replies are helping me think about what I want but I am so confused and nervous about the outcome. When my GP mentioned autism I felt a bit relieved but since my referral was accepted after an assessment with the MH team I am getting really stressed and feel I have no where to go for help.
your response has been a help, it shows I’m not the only one
Thank you for your reply, hearing about others does help.
I feel I agree with lots you have said, I struggle saying no and spend time with friends feeling so uncomfortable just wanting to be at home. I am also angry nobody has helped me before as school was a nightmare for me.
I feel my life is one big act, everybody thinks I am quiet and very laid back which is an image I have worked hard to portray but little spo they no how stressed and anxious I really am. I found a job with a really good manager who seemed to understand me and I was very successful, unfortunately she left and my new boss just didn’t understand me and I just fell apart and ended up been too ill to work. I am so frustrated I am not able to express myself.
This is really daft but I have said more to you about how I feel on here than I have ever said to anybody else, I guess it’s because you get it.
thank you again x
I'm so glad we are able to help you and that you have us to talk to. My son too felt like life was one big act and that no one got him and to some extent it still is as so many people don't understand what autism is. They say to him, 'you don't look autistic', which makes him a little angry as no one does as its not a physical look or what they expect and because like you he put on an act. He's happy he's autistic and doesn't want to be ordinary but he does want more understanding from the ordinary people. Luckily it is getting more publicity now but it still has a long way to go.
I'm so sorry to hear about your job and the manager not being able to support you or understand you. One of the best things about obtaining a diagnosis is that you should be able to get specialised therapy which really helps. After my son's diagnosis he was offered therapy at the same location to which he agreed to because he has always wanted it but for the right reasons (i.e. not for depression or PTSD etc. but for autism). It is helping my son a lot and this is where he has learnt to say no to people and situations. That is it right to say 'No' if you do not want to do something that you don't have to fit in and act ordinary. It's showing him that it is right to be him just as he is. I hope if you go for it you get this help too and it really benefits you.
I got a diagnosis last year at 33. I found the process a little long winded (Took around a year from the very first appointment to the final diagnosis) but well worth it,
Some of the points I found to be the most important for me, and why I would recommend the experience:
Also, what I have found the most important - I have learned that I am part of a group where we are all as different to each other as everyone else is. I am not a person with something missing, but someone just wired a little different, and although I have many issues and struggles, I am ok with being me, and as long as I know that, I can get by.
(Also I have found it feels good to write stuff down!)
Thank you for your advice - I’m so glad your son is happy and the diagnosis has helped. I am sure that it will help me too and some days I feel like that and other days I decide that it will make things worse. I’m sure the nurse is sick of me as I call and leave a message for her to call me back so I can pull out but when she calls me back I start to panic and don’t answer.
i was at my last job for 10 years before everything went wrong and after a year off I found another job against my drs advice, I’ve proved him wrong and coped well for about 7 weeks but I feel I stand out here as the company is smaller. My manager is a nice person but I would never tell him about this. Today before we left he threw his phone and started swearing which everybody else ignored but it really shook me up as it scared me a bit. I feel so stupid as he is just stressed and wasn’t aiming it at me but I’m worrying about going back 2moro - silly really
The help your son got sounds good but this hasn’t been mentioned to me or if it has I have not taken it on.
thanks again the advice u have given has really helped, I hope u son & u stay well x
Thank you for your reply
one of the things that is putting me off and wanting to pull out is the length of time and this is one of the things you have confirmed. I am also concerned about what you have said with regards to finding out how others see you, that really worries me.
i think where you said about been yourself is great as that’s all I want but can’t see that happening, I think it is because I have put on an act for so long. I am also not sure who to take with me as I haven’t told anybody about my referral
i totally agree with writing things down, I write things down a lot and draw diagrams / flow charts to get my head round things