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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

  • 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. 

Reply

  • 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. 

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