Newly diagnosed son, worried parent

Hi, my 4 year old son was diagnosed recently. My son uses some single words and learnt phrases but can not have a conversation. He does not have issues with sleep or routine, but does have repetitive behaviours, such as saying the same words. He likes other kids and will attempt to join in with active play games but because of his language delays struggles to maintain interact with them. I am very lucky as he is a very gentle and happy child who shows a lot of love. 

If I am honest I suspected my son had autism from before he was two but I couldn’t bring myself to accept. When we finally got a diagnosis to be honest I actually feel like I have gone into a further denial but at night when I am alone my fears about his future, what to expect, will he make friends, will he be able to talk etc came flooding back and I cry for hours. I don’t know what to do. We are currently in the process of getting an EHCP to get him into a specialist unit but again this scares me as I know in my heart it is what is best for him but I can’t help but feel sad about it at the same time. I feel guilty for feeling that way. My husband and I are really struggling coming to turns with the diagnosis. 

I would love some advice from parents who have been through this before. 

Thanks 

Parents
  • Hi NAS37575,

    I am sorry to hear that you are struggling to come to terms with the diagnosis.  We have a brilliant and supportive community here - I am sure people will jump in with advice.

    In the meantime, you may find the following information useful. Post-diagnosis can be a very nervous time for any parent, but we're here to help you. In this link you can find information on the effects on your family, getting some practical support as well as telling your child about their diagnosis. http://www.autism.org.uk/about/diagnosis/whats-next-information-campaign.asp

    You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism.  You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively, you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    You might be able to access an EarlyBird (under five years) and EarlyBird Plus (ages four-eight) support programme for parents and carers, which offer advice and guidance on strategies and approaches for dealing with young autistic children - http://www.autism.org.uk/services/community/family-support/earlybird.aspx

    If you have any other questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).  Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    Hope this information is useful,

    Nicky-Mod

Reply
  • Hi NAS37575,

    I am sorry to hear that you are struggling to come to terms with the diagnosis.  We have a brilliant and supportive community here - I am sure people will jump in with advice.

    In the meantime, you may find the following information useful. Post-diagnosis can be a very nervous time for any parent, but we're here to help you. In this link you can find information on the effects on your family, getting some practical support as well as telling your child about their diagnosis. http://www.autism.org.uk/about/diagnosis/whats-next-information-campaign.asp

    You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism.  You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively, you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    You might be able to access an EarlyBird (under five years) and EarlyBird Plus (ages four-eight) support programme for parents and carers, which offer advice and guidance on strategies and approaches for dealing with young autistic children - http://www.autism.org.uk/services/community/family-support/earlybird.aspx

    If you have any other questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).  Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

    Hope this information is useful,

    Nicky-Mod

Children