To tell or not to tell? How/When?

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As I am waiting another week to receive my final ASD report, I started to think about if, how and when I will tell my family and friends. I would appreciate your input on this. It would help me a lot to see other perspectives.

Did you tell them? If so, how did you do it? How long after diagnosis?

If you didn’t tell them, why not?

My assessment doctor had me sign a consent form so she could send a copy to my GP and my then psychiatrist. All my GP ever said after receiving it was "Why did you go for an assessment?", which I answered. She never mentioned it again. My psychiatrist said she didn't receive the report which was quite likely a lie because a month had elapsed when I saw her. She admitted she doesn't open her mail. So I was prepared with a hard copy. She had no comment. It was the last time I was seeing her, anyway.

I told my exbf who is still a good friend, about a month after assessment. He accepted it but didn't give the topic much interest or exploration. Then I told two female friends. One said that everyone has autism, and the other said "Oh, that makes sense".

None of them ever discussed it again.

I didn't tell my mother because she thinks autistic people are ret*d. (No, we don't get along).

Oh, Isabella! Did you feel you needed more support? Did you feel like you had to recompile yourself and rethink a lot of stuff after the diagnosis? How did you cope?

No, I was fine. I'm a solitary person and I think things through on my own anyway. I don't spend a lot of time outside the house or with friends, so it didn't affect my social life very much.

My GP accepts the assessment but I have a lot of other diagnoses, so this was just "one more". She didn't refute it in any way, we just haven't had another reason to discuss it.

I joined Wrong Planet six months prior to my assessment and I already had the support of some incredible people here who helped me to navigate my emotions. I did a lot of reading and research thanks to their support and resources. If I didn't have Wrong Planet I suppose it would have been a lot more confusing for me. Immeasurable thanks to those people, especially River.

I've since told a lot of random people and when I go to new doctors or specialists I mention it on the intake forms, but no one has ever commented. I have an ASD therapist too, but I don't find her particularly helpful. It's a solitary journey because even if I found people well versed in autism, everyone is different and my path would be unique.

Isabella, I’m so glad you found support here in this group! I’m sorry your ASD Therapist is not very helpful.

My husband has been incredible supporting me through this process. My mom is in a bit of shock. I haven’t told anyone else that I’m being tested. I have no idea how my dad will react if I tell him.

Like my Psychologist said, he needs to see if all my “many ASD behaviors” (as he put it) really impact my functioning before he gives me the diagnosis. So there is a chance he won’t. I feel that if he decides not to give me the diagnosis, I won’t be able to tell anyone else. I will know it in my heart (no doubt about it), but I won’t be able to tell people, you know?

I keep thinking of the DSM5 criteria for HFA, “needs support”, and I think that’s what my husband has been doing all these years that I went undiagnosed. If it weren’t for his support, there is no telling how bad things could have become for me. My low self esteem probably would have driven me somewhere really dark. I don’t know if the Psychologist will be able to see this tho.

I was assessed with Moderate (Level 2) autism needing significant support, despite the fact I used to have a career and I own a house. Mind you, I'm now quite incapacitated between my autistic breakdown and my comorbid conditions which are CPTSD, MDD, GAD with Panic Disorder, Agoraphobia and Selective Mutism. Just because you may be coping fairly well now, it doesn't necessarily mean you will be coping in the future. We tend to burn out as we get older, from an accumulation of social stressors, physical exhaustion and executive dysfunction. Some of us hit a wall and can't go any further. If you have a husband and two parents it sounds like you already have "support" in place; you likely need that amount of support to cope. As you suggested, if your support system was taken away your ability to manage could / would be quite different. You would benefit from having ASD documentation to receive professional support at that time, in lieu of your family.

If you meet the criteria of DSM5 you should be identified regardless of how well you are coping.

WOW! I didn’t know we can get to a point we can hit a wall...

My heart goes out to you, for facing all you are facing and still come here to help others.

Care with my mental health now just jumped to 1st priority. Especially with me needing to help my son who is just now starting his journey. I need to be present for him. I won’t do a good job at that if I’m burned out. Goodness...

Thank you for the valuable info!