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.
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,
Hi hun. I know exactly where you are coming from. That was exactly what I was like when my son was diagnosed just before his 2nd birthday. It was the hardest thing I had to do. I fought to get him diagnosed so we could get help for him, then when he was diagnosed I fought against it.
We got him a statement as he was struggling to cope in mainstream school, again that was so hard to send him off on a school bus with strangers to a special needs school at 4 year old with staff we had never met.
So I have been through the same as you and its not easy but you will do it, and you will become stronger and stronger. Dont feel guilty, its lovely that you both care so much. It took me years to come to terms with his diagnosis and I cried so much. Again theres nothing wrong with that.
I think an Early Bird course will help you understand a bit more about the diagnosis. But every child is different so dont think your son will be everything they may say. He may have some traits but not others.
I know how hard it is but I think you are doing the right thing getting a EHCP for him. Dont forget how strong you are to be able to do this to help him. I was told by someone that it takes a strong person to admit their child may have certain difficulties.
My son is 9 now and has been in a specialist school since since 4 year old. Although it was very difficult it was the right thing to do and he copes so much better in this environment where staff are trained to help and support him. Your son should have access to a speech therapist also.
Keep saying words to him all the time and Im sure he will eventually repeat them and his speech will grow and grow. Unfortunately its little steps but every step will be a huge achievement.
I would also say try not to read everything about autism all the time. I did that and drove myself mad as it consumed my life. Try to do things without thinking or talking about the autism aswell to give yourselves a break from it.
My counsellor told me "life is different and it wont ever be the same again - but thats okay". She told me that as I compared my son being diagnosed to a grieving process.
I promise you will both get stronger and remember to enjoy him every day. He is an amazing, clever little boy.
I hope I have helped a little. Just try and take one day at a time and dont look too far ahead.
Sending you all loads of love and strength. If you want to ask me anything please do so. Xxx
Thank you for replying to me! I will check out the information you have provided.
Hey, thanks for replying to me. It is very helpful and comforting to know I am not alone in how I am feeling. It’s a great to hear that it does get easier with time. As you said I do feel like I am going through a grieving process but I glad to know that this is some what normal. I feel very catch up with my son being able to talk at the moment, and I try not to put to much pressure on him to speak. He is able to repeat words back to me and does know lots of single words. Any tips on helping improve his communication further? Any groups you could recommend?
You are definitely not alone. I use PECS with my son. It's communicating using picture symbols and it helps to encourage speech. A speech therapist would need to show you how to do it as there are quite a few stages of it. You could google it though so you know exactly how it works. My son's speech has definitely improved using it.
Also you just need to talk to him using as few words as possible so its less for him to have to process, then you can slowly start to increase words. I would tell him one or two words to tell him what things are, even things around the home like chair, bed, spoon etc. As he already knows lots of single words you could try adding another word, so blue table, 1 chair, so he will then learn numbers, letters, colours etc aswell. In my experience they wont talk unless they have to, so I would encourage it as much as you can. My son still points to things or tries to get things himself even though he can say what he is wanting. But I wont give him things unless he asks for it.
I think Early Bird is definitely the best group. I did a 10 week course at my sons school and I learnt so much. Im not sure if you can access it any other way though.
You could contact your local council also to see if theres anything they can support you with, like youth clubs or parenting groups.
At the start I was desperate to speak to parents in the same position as me but then it started to become very intense where other parents thought it was a competition as to what their child could do compared to others. That wasnt for me so I pulled away as I needed positive people around me, not negative.
I am now stronger and happier to support my son alone without negative people around me, so if you meet people like that dont be afraid to back away from them if they make you feel worse.
Im sure others will reply to you aswell as they may know of more groups or communication tips. Hope this helps. Xxx