Telling family members about diagnosis

Hello, I am a 20 year old female and I have recently been diagnosed with ASD. I have been open with both my parents throughout the diagnostic process and my mum has been really supportive. My dad however has been acting very strangely post-diagnosis and has suggested that I just told my therapist what she wanted to hear and that there is no need to label things. I think that he could be autistic too as he has a lot of the same traits as me and think he could possibly be realising he may have it too. I don't think he has done any research into ASD and he doesn't seem to have much of an interest in it, but this is a really big thing for me and I feel he is really bringing it down because of his strange and quite mean behaviour towards me. This is also making me worry about telling other family members because if this is how my own dad reacts, how will others who maybe don't understand me as well react. 

Does anyone have any advice on telling family members about an autism diagnosis and how to deal with bad reactions to it? 

  • A couple of things - you are exactly the same now as you were before diagnosis - so parents and friends often dismiss a diagnosis because they are used to you and as far as they are concerned, your quirks are nothing to be concerned about - so they often go into denial.

    Also, your dad may be realising that your quirks are exactly the same as the ones he's suppressing - he might be realising that he may be on the spectrum too - it's common for ASD to run in families.

    Also, he might be having difficulties accepting that he suddenly has a 'faulty' child - so there's a lot of guilt and worry over this revelation - he might be having difficulty processing it all - he may be very upset with himself and worrying about your long-term future with regard to jobs, relationships, lifestyle etc. - it's a lot for him to deal with all in one go.    Give him time to process and spend time talking to him and find out if it's really bothering him.

  • Thank you so much for your advice that's very useful! I think I will try out the journalling as that sounds like it could be very helpful and a good way to keep track of my autism and maybe things that trigger me. 

  • Hi, I'm sorry that you've been having some difficulty following your diagnosis. My thoughts are that I think it's really important to prioritise being comfortable within yourself, and to be very sure of your own 'truth'. What really helps me is journalling daily, to make sure that I am aware of my own experiences and intentions. For example, I find it very helpful to keep note of conversations where I cannot 'hear' what is being said, or moments of noticing overload, so that I don't doubt myself and my own experiences. Unfortunately we can't change what other people do, and our own words, actions and character are the only things we can affect. Even if others are saying and doing certain things, if you try to act in the best way you possibly can in response with the intention of having a good relationship, and are comfortable with your own actions, it can really carry you through difficult times. I also think having one friend or family member who you can talk to is extremely helpful, and do go easy on yourself and go at your own pace. You don't have to tell other people yet if you don't want to, and you could choose to keep it to a very small circle for now. It's a very personal decision. For me, I only really talk about it with family, close friends and my immediate work team (and on this forum!). It could even be done gradually, just by opening up a little more about what's true for you when you notice it, e.g. saying in a conversation, 'I'm sorry, I'm not sure I understand, would you mind repeating it for me please?'. Wishing you all the best

  • I just thought of something else that might help you.  This is how it was for my wife and i.  She told me I had Aspergers and I shut her down an said no way.  Then I told her you know what I think I do have Aspergers.  As soon as I did that she shut me down and said no you don't.  This actually did not comfort me, it made me feel alone.  I finally gave up on convincing her and let her come around without my pressure.  It seems like when you pressure someone to agree with you, it will result in resistance.

  • Good luck with all. I guess the slightly older generation may look at conditions (autism spectrum condition does sound better than disorder) as weaknesses. Whereas the younger generations are more likely to look at things like autism as presenting unique strengths.

  • That's really good that you have started to connect with your dad it definitely gives me some hope! we have discussed the possibility of me and him being autistic for quite some time now and he has always had similar responses, I think its mainly because he doesn't really know enough about it so I will maybe try and give him some articles to read to help him understand (although I doubt he would want to) I think its definitely something that will take time. I was diagnosed with anxiety and he came to accept that eventually so hopefully it just needs some getting used to. 

  • Thank you for your response! its good to hear I'm not alone and that many others are facing similar struggles. I'm stuck between wanting to share with my family as this is a big part of me and not wanting them to know in case they treat me differently. I think I'm going to give it a while to settle in properly, then decide on who to tell in my family. I am glad to have found this platform to hear stories from likeminded people :)

  • I've fairly recently realised that I likely have Asperger's (or some similar/overlapping autism spectrum condition).

    When I've talked about it to my dad, he's winced a bit and has been a bit uncomfortable when I've talked about things.

    I've asked him: "What's wrong?", "Are you ashamed in some way?" and the conversation has a got a bit uncomfortable.

    However, as a bit of time has passed, he has started to 'connect' around the topic and just the other day, he ventured something about autism that connected with him. That's the first time he's done that.


    People sometimes take quite a bit of time to come around to things. Sometimes they need a bit of a nudge and sometimes it just needs to sink in a bit. (Depends on the person I guess) And if your dad does have traits of autism, he might need a bit more time than others to take things in. As dealing with change and new environments and ideas can be a bit more difficult to adjust to for many people with ASD (ASC).

  • One thing that I have done with my wife is to text her.   Some conversations are just too unpredictable for me and this provided a safe platform in which I won't get overstimulated.

  • You are very brave. It is hard to tell others about our diagnosis because the label of Autism or Aspergers can have so many different meanings to different people.  I just got off the phone with my dad for two hours.  I wanted to tell him about my diagnosis but couldn't.  He has many autistic characteristics as well.  When I was a child he wouldn't let me get diagnosed because he thought that I would never be able to get a job.  I am sure that my mother and him kind of knew that I was autistic, but they never discussed it with me.  The first time you tell him he will probably shut you down.   It was that way with my wife and I.  It took several years for my wife and I to come to an agreement on what autism is and which parts are applicable to me.  I am actually hoping that others will post some good advice here.  My biggest struggle with autism is fear of the unknown.  If I can't prepare for every possible outcome in a conversation it terrifies me.  What if I get over stimulated and just shut down?  This type of conversation is impossible to prepare for.  I suppose I'm being zero help here.  I know what you're going through if that helps.