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

Nezi

Hi

I am writing this with a very heavy heart- my 3 year old little girl was diagnosed with autism literally yesterday afternoon under an new pilot scheme. The assessment involved an Educational Psychologist and a Paediatrician. My Mum was with my daughter in one room while I was in another with Paediatrician. After a couple of hours of observations and discussions- including input from my daughters nursery- we were told my little girl is autistic.

I completely froze when I heard these words- I broke down in tears and I simply could not stop. I felt and still feel a roller coaster of emotions- shock, grief, fear, guilt - this list goes on and on and on. I’ve found my self mourning a future I thought I knew, while desperately trying to learn and prepare for the one ahead.

I am single parent, a survivor of domestic violence perpetrated by my daughters Dad. We’ve been through ALOT. I’m know and I’m fully aware autistic people can and do live beautiful, meaningful, successful lives. But right now I feel completely lost, I’m going through different thought processes like are these clinicians even 100% right, how can they be so certain? Did they explain how they came to these conclusions thoroughly enough? Should I have challenged them a bit more? Should I get a second opinion? Doctors have been wrong before, why has my daughter got this disability? Is it a disability ? You name it I’ve thought it, been through and are going through the emotion. I haven’t slept, I can’t eat, I can’t focus on my work, all I care about is my little girl who is a part of me that’s outside my body and all I want to do is protect her love her and keep her so far away from any harm. My lioness is on top form, I will keep my cub safe and I will kill anyone or anything that remotely hurts her. I feel like I’ve been hit by something; a big lorry that I was completely not prepared for and quite frankly I’m scared for her- scared for how the world might treat her, for her relationships, her safety, mental well being, for how I can be there for 24/7 365 days of every single year to protect and advocate for her the best possible way.

Ive tried reaching out to services since this diagnosis, emailed everyone I could find, called everyone I could find but only one responded. Even trying to fill in support forms seems impossible while I’m in this emotional state. I need to help my daughter I need to be strong I am all she has got. I just don’t know where to start. If anyone has been where I am now please reach out :-(

Parents

  • 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. 

  • in reply to Kate Kestrel

    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!

Reply
  • in reply to Kate Kestrel

    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!

Children