Newly diagnosed son and scared parent

My 3 year old son has just been diagnosed with ASD. We completed a questionnaire with the paediatrician, they confirmed diagnosis and gave us some leaflets to read at home. Now I feel like I have been thrown into this world that I have little understanding about and worried about my sons future. I wasn’t able to ask the Dr any questions because they were running behind. I’m hoping to get some help/support from other people on here. 

My son has an expressive and receptive language delay. He is currently non verbal and will pull you to what he wants or bring it to you (the remote control if he wants the tv on ect) he can say and read numbers and letters and enjoys nursery rhymes. It can be difficult to get his attention and he can lash out if he doesnt want to do something (pinch and slap) he likes to engage with children but as his communication is limited he finds it difficult he also doesn’t understand the concept of sharing and his play skills are delayed. He doesn’t have any routine/food/sleep issues. 

for all the parents and carers out there with children with ASD does it get better? How will I know if he is going to be high or low functioning? He is on the waiting list for speech therapy, is there anything I can do to help him progress? 

I know everyone with ASD is different. It would just be good to hear some of your experiences and share any advice with me. 

I have spent the last couple of days crying and worrying my son will never develop. I have decided it’s pointless crying and being upset and I’m putting all my efforts into helping him. Any advice on where to go next would be really helpful! 

Parents
  • Hi, my 4 year old son was also diagnosised recently. My son uses some single words and learnt phrases but can not have a conversation. He also does not have issues with sleep or routine. 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. 

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

    Thanks 

  • Hi, 

    We sound exactly the same! My son has just started saying single words but no conversation. I also have days when I feel like I have accepted it and then I crumble in the evenings. I think it makes it worse when family and friends don’t accept the diagnosis and tell you the Drs are wrong. 

    I have joined local support groups because my husband and I are not strong enough at the moment to deal with it alone. One of first things said in the group is there is nothing wrong with having autism it’s just your brain is wired differently. This is what made me feel guilty because I feel like autism has robbed my son from me. But I think I’m just at that stage of anger and it will pass. 

    We are applying for an ECHP so it will be in place for when he goes to school. 

    Another question I have for anyone reading did any of your children go to mainstream or was it straight into a special school? 

    I guess i can’t offer you any advice just yet because I’m new to it too but I’m happy to chat anytime and share the good the bad or anything thats worth sharing along our journey.

Reply
  • Hi, 

    We sound exactly the same! My son has just started saying single words but no conversation. I also have days when I feel like I have accepted it and then I crumble in the evenings. I think it makes it worse when family and friends don’t accept the diagnosis and tell you the Drs are wrong. 

    I have joined local support groups because my husband and I are not strong enough at the moment to deal with it alone. One of first things said in the group is there is nothing wrong with having autism it’s just your brain is wired differently. This is what made me feel guilty because I feel like autism has robbed my son from me. But I think I’m just at that stage of anger and it will pass. 

    We are applying for an ECHP so it will be in place for when he goes to school. 

    Another question I have for anyone reading did any of your children go to mainstream or was it straight into a special school? 

    I guess i can’t offer you any advice just yet because I’m new to it too but I’m happy to chat anytime and share the good the bad or anything thats worth sharing along our journey.

Children
  • Hey, 

    so glad to hear I am not alone in feeling this way. We also struggle with family and friends also not able to accept it. 

    I also understand how it you feel when you say it feels like autism has robbed you of your son. I have felt exactly the same way. I keep thinking why us, it’s not fair, this is not how I thought his life would be. In my head I had a picture of cute little conversations with him etc and I can’t help but feel sad when I see children his age and younger at nursery talking away about their day, while I have to rely on what the staff at his nursery tell me. Don’t get me wrong, The staff a lovely and wonderful but I can’t help but feel jealous of the other parents, which further makes me feel guilty. I guess im also in between the denial and anger stage, and hopefully it will pass.

    with regards to school, we are planning on sending our son to a specialist unit that is attached to a mainstream so hopefully he will be able to join in with some mainstream lessons and activities as well as get the specialist teaching.