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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

  • 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. 

Reply

  • 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. 

Children
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