New Diagnosis for My 3-Year-Old Daughter – Feeling Overwhelmed and Alone

This list of Autistic people in UK (and beyond) might provide some further ideas of names with which your family may be familiar - but maybe not have known they are Autistic or Neurodivergent:

https://www.leicspart.nhs.uk/autism-space/health-and-lifestyle/autistic-people-in-the-public-eye/

Dr Pooky Knightsmith's website includes a lot of materials which might aid families too (PhD from the Institute of Psychiatry, Kings College London, is the former chair of Children and Young People’s Mental Health Coalition, the author of several books and educator of thousands through her speaking, online training and YouTube videos):

https://www.pookyknightsmith.com/ 

Thanks Ann :) Will reply to you later btw! 

This is amazing advice. It’s actually exactly what my mum did even though she didn’t know I was autistic- she made me feel proud to be different- at least when I was relatively young - at some point too much negative input from peer somewhat changed my mind. But it did help me a lot that she made me view difference in a good way. Even now we still say we are aliens :) and aliens are great!

Just a quick extra thought about telling your daughter about her diagnosis - you can take your time over this (she’s very young so at this point you can just talk in terms of some children needing a bit of extra help etc) and start by laying down really good groundwork way before you need to address the diagnosis itself. One thing that I found particularly helpful with my youngest son (he was diagnosed at 10 years old) was that way before he got the actual diagnosis (but I could see it coming so was preparing him for it) I identified well known people (contemporary and historical) who were autistic and talked a little about that, and about children in his school who had dyslexia- or any other kind of ‘difference’ or neurodivergence, or even just eccentricity etc. Essentially I was consistently being very positive with him about difference and diversity of every kind - and questioning in subtle ways the need to ‘fit in’ and conform to what’s expected of us. Celebrating difference and individuality of all kinds basically.  Presumably your daughter is already showing ‘difference’ on some level as she’s been identified as autistic - so do all you can to celebrate and embrace difference - both in her and in others. 
I think one of the hardest things about being autistic is that our self esteem is often damaged by feeling different to others in school - we can feel so bad about ourselves and feel like failures. So I think one of the best things we can do for our children is to do all we can to counteract this and help them to have good self esteem by celebrating the full diversity of human beings and how everyone is of value and to be celebrated- whoever they are, and whatever challenges they have. In fact you can instil in them that having challenges and dealing with them actually makes you a more ‘impressive’ person in many ways, and can make people more empathic and compassionate towards others etc etc. Being autistic is an intrinsic part of your daughter’s identity - so her being positive about autism and difference in general is vital to her feeling good about herself. 
Good autistic role models (in the media or in her family or school)  are massively helpful in doing this. My son for example really likes nature and wildlife - and he really admires Chris Packham - who is a great role model for autistic people. When I discussed my my son’s autism with my own father he was very encouraged by the fact that he knew Chris Packham was autistic - and he admired Chris Packham - and it helped him to understand that a lot of people with autism can live fulfilling lives etc.  My eldest was very academic and there are lots of great scientists and artists from history who were autistic (eg Albert Einstein) - and it’s all part of building up a positive picture of autism in your child’s thinking. 
There are loads of well known autistic people now in the media - in science, in music, in acting, in business, on tv etc - so you can utilise the fact that there is a lot of openness about neurodiversity now. 
So start now in laying down the groundwork that will mean that when you feel the time is right to mention the diagnosis you are already half way there in terms of your daughters perception of difference amongst humans and how we are ALL different in one way or another - and we should celebrate that. 

I understand that the diagnosis has come as a surprise and that you feel overwhelmed. However I do think it is good that you know early on and can make sure your daughter is well supported from the start. A lot of challenges can arise when autistic individuals do not realise they are autistic and try very hard to fit it or when their challenges are misinterpreted as something else. I am autistic myself but was only diagnosed at age 25 and I do feel that I would have benefited from an earlier diagnosis. I understand that you may worry about the label and it’s true that there are still a lot of misconceptions about autism out there. However this is very valuable information for your daughter and for you and also for the school because you can now better support her. Autistic individuals can thrive and I think the key for this is to understand what works for you and making sure you are in an environment that is suitable. I have many autistic friends, all of which actually have university degrees and many of them even have or are pursuing PhDs and most are doing really well and are leading happy and independent lives. I’m also pursuing a PhD at present- I do have my struggles as I’m still figuring out what works best for me but I do think it is possible for autistic individuals to live very happy lives . A lot of the issues do come from the way society is set up and from others not understanding about autistic individuals and their needs but I am hopeful awareness is increasing so by the time your daughter is older hopefully awareness will be greater. I hope this helps. In terms of telling your daughter I think there were previous posts about this with resources and tips about this. Again I actually think that when you do tell her it will be a good thing. Children do notice they are different from others. I definitely knew that and there is a huge pressure to try to fit in or to put yourself down when you can’t. I used to feel so guilty and responsible that I wasn’t trying harder to make friends at school and thought something was wrong with me. It can actually be quite helpful to understand why you feel different. So I don’t actually think it is a negative thing. The issues arise when you don’t know why you are different and burn yourself out by trying not to be. Your daughter is still young- you have plenty of time to gather information and to figure out what is best. Keep reaching out- we are all here to support if we can and to share our experiences. And also remember that being autistic has strengths too- for me I think a lot of my autistic traits actually make me a better scientist- my love and attention to detail, my ability to hyperfocus etc. 

Labels and having a diagnosis can have advantages, but they can also have a negative side. At the moment you’re very much experiencing the problematic aspects of your daughter getting an autism diagnosis. But trust me - it’s definitely in your daughter’s best interests to have her needs identified - because this dramatically increases her chances of having her needs met. Ultimately that’s what matters most - she’s 3 and vulnerable, you’re an adult who is feeling shaken and upset right now - of the two of you she is the priority - and this diagnosis is a very distinctive step forward for her. It means you can understand her better, you can help her to be happier, and to have a better chance of thriving in an educational setting. It’s very early days and you’re only human - so please don’t feel bad that you’re struggling with this at first. But your daughter needs you. Being autistic is an intrinsic part of who she is - she can’t be separated from it - so if you truly love her you need to love her autistic self just as much as the other aspects of who she is. In time I feel completely confident that you’ll embrace all the aspects of your daughter - including all those that are associated with her being autistic. I have two autistic children (young adults now) and wouldn’t change anything about them - they are wonderful people and I couldn’t be more proud of them. It might be a cliche but there genuinely are many positives about being autistic - even though there are many challenges too. One of my children was very academically gifted and is now doing a PHD, and my other child seriously struggled academically and had selective mutism  in school - but has a million great qualities that make him an absolute joy to know. They are both amazing, loving, kind people and a lot of that is BECAUSE they are autistic. It’s going to be ok - please believe me - you’re just in a shock I imagine? But it really will be ok :)  

You are absolutely right Stuart, thank you is an understatement. I am just naturally a worried- stressed parent, all I ever do is worry about her. I think that's partially because I had her later in life, 36 years old and so I am aware and conscious of everything that could go wrong or be bad for her. I have made an appointment for myself with my GP to see if I can get any professional support, because I really need to be strong for my daughter through this whole process. 

Do you think she would understand if you told her now? No. So you have plenty of time.

She is just busy being herself.

You need to be less hard on yourself. You don't need to resolve everything in the first week.

The reason to know now is more for you than her, so you can make allowances and not worry she is ill. If there are sensory things that cause her distress you can avoid them or find workarounds. It is to make her life less stressful and more happy, which is what you also want.

Wouldn’t*

Thank you so much everyone, l agree and will follow all your advice and suggestions. I just feel completely numb today I think I’ve given all my energy to these wild emotions already, but I do still keep having questions and thoughts zinging around in my brain. Like when do you even tell a 3 year old she’s autistic? How would that make her feel? Or see herself! If I don’t tell her early enough will she think I was ashamed or embarrassed of her? Which of course is and will never be the case, I would change her for anything, she’s my baby I love her and she’s my whole entire life and world.. and I’m crying again now :/( I’m so heartbroken I’ve never felt like in this in my whole 39 years of living for anyone or anything else 

Hi and welcome to the community.

Hopefully, you'll receive some more replies here from other parents who have been, or are in, your position.

Whether that's the case or not, I suggest requesting a call from another parent via the NAS’s emotional support helpline, so you can discuss your feelings via a more personal, one-to-one, phone conversation: 

“The Parent to Parent Emotional Support Service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences.”

NAS - Parent to Parent Emotional Support Helpline

After having allowed time for everything to sink in, if you feel that you'd like reassurance about the accuracy of the diagnosis, then the NAS suggests:

"If you disagree with the outcome of the assessment, you may want to raise your concerns directly with the team of professionals who assessed you. You can consider requesting a second opinion by going to your GP if you have had an assessment through the NHS."

NAS - What happens during an autism diagnosis > Assessment results and report

Looking a little further ahead, you might like to make a note to check the NAS's other online advice resources. They include, for example:

NAS - After diagnosis

Finally, in case it might be helpful (whether now or later, and perhaps as source of comfort, encouragement, hope, or similar), I'll just mention the BBC drama called “The A Word”, which is available on BBC iPlayer.

The drama explores the experiences of parents of autistic children, starting with a focus on a five year old autistic boy. The writers were advised by Tom Purser (previously of the NAS, and who now heads the Autism Centre of Excellence at Cambridge) whose own son was diagnosed when a toddler.

In this article about the programme, he explained how “My wife talks about grieving. As first-time parents your expectation about what your child is going to be like is shattered by that diagnosis.”  

BBC - The relief and grief of a child being diagnosed with autism

The show has drawn a lot of praise from audiences for accurately depicting the positives aspects of having autistic children, as well as directly addressing the emotional struggles that it can involve: 

BBC iPlayer - The A Word

I hope some of this, at least, is helpful. 

My daughter was diagnosed around 4 years old, but my experience is a bit different since I was diagnosed before her.

Stuart333’s absolutely right and he gave some great advice. Continuing off of what he said about not worrying so much about the future: I have six books on Autism at work. Five of those were written by Autistic people. Two of those authors have doctorates. These aren’t even savants (like possibly Mozart and Einstein), these are normal Autistic people who found their own way in the world.

Things still look pretty good for our daughters. What is important is for them to have a solid support system now, which your daughter obviously has with you.

Hello, give yourself a chance, be kind, it has only been 24 hrs.
People may not respond that quickly and you need to allow yourself a little bit of space to get some perspective and stop your mind racing.

You have jumped a long way into the future considering all sorts of possible outcomes, including many not good ones, which is why you are scared.
Maybe everything will turn out fine. It's not an all-or-nothing thing. What if you assume the best instead of the worst?
Your daughter is not ill. She will grow to be her own person. Perhaps she will be very skilled and you won't need to there all the time to protect her.

In the short term I think you need to think of yourself first. You can't do your best for yourself or your daughter if you don't eat or rest and lose perspective.
The forms will still be there next week, take a few days, it will not make much difference.
Your daughter will pick up on your fears which will not help.

The reason for the doctors to be involved is so people are aware. People may contact you in a few days.
You and your daughter are the same people today that they were last week. Nothing has changed except you now have fears which may not be real, you don't know what the future will be yet.