In shock at new diagnosis. How did you all feel?

Long story short my son has had noticable problems since he started nursery at the age of 2 cut to now hes just turned 5 and i was told by his consultant he would see him once more after he turned 5 and then take him to the panel. So yesterday we went to this app which was meant to be the last before panel and was floored to say the least when he just came out with diagnosis of asd. If im honest i think i am still in shock . I am gutted and ive cried and i worry that now hes got this label for life and thiers no more " he might grow out of it " . 

Im happy as i no we can reach out for support now with this im scared because qe have faught this battle on our own for so long to let new people in

 I dont really no where we go from here either  he gave me a number for a course n said he qould get intouch with certain people to get intouch with me but nothin spercific as such then said he would be discharging him as his only job was to diagnose him.   

Where do we go from here ?what happens. I heard every autistic child should have a keyworker is this correct . If so from where and what do they do ? Im so confussed right now if im honest im finding it hard to process. Weve known for a while but having it in black and white is hard to see. I love him god i love him so much and wouldnt change him for the world i gyess im after advise to see what others did after diagnosis. Will it help or isit allways going to be a battle 

  • I don't really know much about children but my husband who is 69 years old could have done with loving parents as you obviously are.He can be a nightmare but he cannot help it .Love your child and accept that he is different from some but also realise that he is the same as many others . In my small opinion you are the best support that he can ever have and he is probably going to be the nicest thing in your life.Strange as my husband  may be to others I would not swap him.

  • This is very early doors. You have to give yourself time to honour and process your emotions, which are naturally shot through right now. This is a huge blow. I would seriously, first of all, advice seeking out some counselling. You won't need much and they don't have to be highly skilled. You just need somebody, outside of your family or friends circle, to bounce this off. You need to get this out of your system now but give it the respect and time it deserves.

    This can be seen as being akin to grief, after a loved one dies. Because in some ways, it is. But only of the ideas we held of what we wanted for our children. Your son is an extra special gift, because he's going to take you on a magical journey, if you're up for it. And I think you are. But first of all, you have to honour your feelings and those feelings that all parents share. After that, the way forward will look clearer. But once you get into it all, you need to be strong, and have a strong network, such as a local parents group. But all that can wait, because once the information starts streaming in, it can cause overload, so you need to be prepared.

    Your little boy is safe and well. He has got his mummy who loves him to the ends of the earth, now is the time for you to take some time to process all this. Your gp surgery will be able to refer you for counselling but tell them you need the support now. This is your time. Honour your losses, to prepare and open the way for a life more marvellous, than you could ever have imagined. I promise you that. Much love to you and there's a reason why he is with you, it's because your the best mummy in the world for him but for now, you need to take care of you X

  • Hi,

    Take some time to adjust to the diagnosis, don't be upset your son is the same loving little boy he was before diagnosis, as for help you could try the services directory on this site that will give you an indication of what is available in your area. 

    You said that your son is 5 that means he is at school make an appointment with the school senco to discuss the diagnosis they will have the information on the help they can give and obtain for him in school 

    Good luck with everything 

  • I think it takes time to get used to a diagnosis. It didn't make a huge difference to me until several months had passed. I don't think it will always be a battle - I am sure that in time you will find it really helpful. The more you know about a person the better - you will be able to understand him more and get lots of tips and ideas about how to adapt your own behaviours. You might even find that it leads to some very fun times. 

  • Thankyou for all of ur comments it means alot just to get an opinion from somebody who understands 

  • Hey

    You may find the following leaflet which you can download from our website 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.
    If you have any other questions, or wanted some more 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.

    Take care,