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Struggling to come to terms with my daughter being autistic

laura766

I hate myself for even feeling this way! I just want to start by saying my daughter means everything to me I would do anything and everything for her she has completed me and I just want to make her life as easy as possible. I knew very early on she was autistic I was in denial for a while and sometimes i feel like I’m maybe still in denial, it was very apparent from an early age that she wasn’t like the other children at baby/toddler groups she never gave eye contact, didn’t like other children near her and done a lot of stimming, she wasn’t reaching her milestones and was very much behind on her development. It was picked up on by her health visitor before her 2nd birthday and she put in a referral to the autism team it got denied because of her age but we started to go to pediatrics and then to speech and language I was recommended to start her in nursery for a few hours a week as this could bring on her development and at nursery they also made special adaptions for her as she had frequent meltdowns, I paid privately when she was 3 for an autism assessment and she was diagnosed autistic they put her down as the higher end of level 2 towards level 3 I asked the person who diagnosed her what’s this mean for the future and if she would live a normal life and have a family of her own one day and he said it was very unlikely and that she would probably always need constant care, this broke my heart but I was still hopeful, she was only 3 and surely no one can tell this young how she will progress! yes she’s got autism that’s apparent but no one can tell how she will be when she’s older. She’s now 4 and I’m not noticing much progression in her everyone tells me she’s coming on loads but I just don’t see it and all I keep thinking about is how she’s going to be in the future I know it’s a long way away but I’m just so sad at the moment it’s like everything I’ve kept bottled in for so long is now coming out, I’m just sad for her and the life she might never have. I don’t want her to struggle through life and look at others and not understand why they are different and why she’s treated differently. I can’t even be around other children at the moment because it chokes me up to hear them talking and communicating and playing with each other and it makes me realize just how different my daughter is. I don’t even know why I’ve come on here I’ve just needed to vent as I’ve got that many emotions at the moment and I don’t feel like I’ve got anyone to talk to about it. 

Parents

  • Hi there Laura.  Thank you for reaching out, it sounds like you're having a really hard time of it at the moment and sharing your feelings and worries is a great first step.  Our online community is here for you, and I'm sure other members who have gone through similar things will have some advice and assurance for you.

    Our guide for parents and carers of autistic children contains a wealth of information on how to support your autistic child through various life stages and challenges, including schooling and even employment in the future, so hopefully it will help put your mind at ease knowing that there are many ways to help your daughter through life as she grows and develops.

    There are also a lot of social care options available, if that is something that you would like to look into.  Assuming you are in the UK, the page linked contains specific info for the different UK countries that may be helpful.

    It is lovely that you are thinking so deeply about your daughter - she is lucky to have a caring parent like you.  But please don't forget to take care of yourself as well!  In that vein, you might like to have a look at our Parent to Parent helpline.  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.

    I hope that this information is of help to you.  Know that you aren't alone, and the online community will always be here for you if you want to get back in touch.  Best wishes to you and your daughter.

Reply

  • Hi there Laura.  Thank you for reaching out, it sounds like you're having a really hard time of it at the moment and sharing your feelings and worries is a great first step.  Our online community is here for you, and I'm sure other members who have gone through similar things will have some advice and assurance for you.

    Our guide for parents and carers of autistic children contains a wealth of information on how to support your autistic child through various life stages and challenges, including schooling and even employment in the future, so hopefully it will help put your mind at ease knowing that there are many ways to help your daughter through life as she grows and develops.

    There are also a lot of social care options available, if that is something that you would like to look into.  Assuming you are in the UK, the page linked contains specific info for the different UK countries that may be helpful.

    It is lovely that you are thinking so deeply about your daughter - she is lucky to have a caring parent like you.  But please don't forget to take care of yourself as well!  In that vein, you might like to have a look at our Parent to Parent helpline.  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.

    I hope that this information is of help to you.  Know that you aren't alone, and the online community will always be here for you if you want to get back in touch.  Best wishes to you and your daughter.

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