Newly diagnosed son and scared parent

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. 

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.

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 

NAS37397 said:

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

In terms of a parental 'road-map' for child rearing and stage developments and challenges regarding ASD,  you might well find useful the information and guidance in a book called the COMPLETE GUIDE TO ASPERGER'S SYNDROME, available as a whole free via the following link:

http://www.autismforthvalley.co.uk/files/5314/4595/7798/Attwood-Tony-The-Complete-Guide-to-Aspergers-Syndrome.pdf

Dont feel guilty for feeling sad.  Its a very natural response.  I think its very important not to think too far ahead. Your son will be completely different then.  I know its hard and at times I still worry about the future.

All the professionals would say that I must be strong to be able to help him and I found that really patronising as it wasnt their child that had Autism.  But to hear it from another parent made it easier to hear as they knew exactly what I was going through.  You will never be alone in this.

Hope you have a lovely day. Xxx

Hi I remember when my son was diagnosed i remember a sense of relief but also cried for weeks on end I remember thinking this will never change how much I love him because people now say he has autism  I thought to myself for days where do I go who do I speak to luckily my mother had gone through it all with my sister and I thought but surely it’s going to be different we are in a time when autism seems more heard of but it was daunting the medical appointments the people coming in treating me like knew nothing and we are 12 years on and I still at times feel lost! now I know this isn’t much of a positive reply but I guess what I am trying to say is always make your voice heard don’t let anyone tell you they know your child because they deal with autism within their job autism isn’t textbook it’s real life I know it’s hard but I have cried everytime my son did one little thing that I knew was difficult for him it made me think if he can do this I can do this but never be afraid to have a good cry or rant because hey we need it at times it’s funny but you realise how strong you really can be :) xxxx

hi

you see i am "new" as well, i know that my son has autism since 2 years however only recently he got diagnosed, ii have been thru all same things, breakdown ,crying,what i did wrong,what could i do differently...etc.milion questions and not even one answer...but i do agree 100% with rainbow, nobody knows your child than you, and don't listen "good advisors"who don't know anything about having child with autism...i did so many mistakes because of that, and my son an myself were depressed...now he is nearly 4 he can kind of communicate he made massive progress from last year only after myself accepting his disorder and learn how to be his best mom...he is happy boy now...and many people will never say what issues he has....but worst thing is stress and anxiety...i have no help or support, no family around here...only me and my husband both working full time so its extremely difficult to manage everything....but we do our best, and believe me i have to say to myself nearly everyday that its not my fault...and i couldn't do anything to prevent it......but i am looking for parents like you to share knowledge, experience, and just talk....

Thank you both for taking the time to reply and for all the useful information. I guess when the diagnosis happens you want to know exactly what will happen in the future and it’s not as simple as that. 

It’s nice to know I’m not alone and other parents felt the same as me. I was starting to feel guilty for being sad. 

We are taking each day as it comes and my little one is enjoying all the extra attention he is getting :) 

Hi hun.  You sound exactly like me when my son was diagnosed.  He was only 23 months.  He is 9 now.  I was terrified as I knew very little about Autism and I felt so lost.  My main worry was the future and how he would cope in life.  I went on anti depressants and I couldnt function.  I wish I had known about this forum at the time.

I totally agree with Blade when they said dont think of low or high functioning.  What helped me was learning to take one day at a  time and stop thinking about the futuure.  

Your son will change all the time.  You dont know what he will be like when hes older.  Someone told me their son had no speech until they were 10 then they started to talk.  

My son had no speech either.  Now he can say small sentences.  When you talk to your son keep it short and to the point using key words.  For example when my son was 3 I used to do bubbles with him, and every time the bubbles burst I said 'pop'.  I kept doing it over and over again until he eventually said 'pop'.  I was over the moon.  So try and get him to say one word for now.  What are his interests?  If its cars, try and get him to say 'car'.  Try not to overwhelm him though as he may struggle to process it all which could cause negative behaviours.  Just do it in small intervals throughout the day.

If he is getting a statement that will allow him to get into a specialist school. Would you do this?  I found this very hard admitting he couldnt manage in mainstream, but it was the best thing for him as he has progressed so much more than he would in mainstream.  Specialist schools will have a speech therapist on site so he will have access to one there.

Do things with him that he enjoys.  So you said he likes nursery rhymes.  So sit on the floor and sing with him.  Try doing action songs as he may start to copy you.  I used to sing row row row your boat and we sat opposite each other holding hands rocking back and forward.  After a while my son started to say the odd words in the song, now he can sing the whole song himself.

I know how frustrating it is as to how long things take but he will get there.  When he takes you to the remote control, maybe say 'remote'. Just use one word. Still let him have what he is wanting, but say the word.  Then over time he will learn thats what it is called and will start to say it.  It may take a long time but please dont give up and keep saying it.  He will be taking it in, he ll just need longer to process it.

When he pinches or slaps say 'kind hands' and remove his hand from you.  You are supposed to say things in a positive way rather than a negative way.  In other words try not to use the word 'no' as they dont like to hear this word.  So if he kicked you could say 'kind feet' or say 'feet on floor'. 

You can teach him to share and take turns.  Do things together first.  So choose something he likes to do, then say mammys turn,  your turn, mammys turn, your turn.

I use PECS with my son. The pictures reinforce what I am learning him and he has progressed so much using this. You will need a speech therapist to teach you how to do PECS but I strongly recommend it.  My son's speech has progessed a lot using PECS.

So I do know exactly what you are going through and I know how hard it is.  But I promise you, you will get stronger. And remember you know your son better than anyone and dont let anyone tell you otherwise.  You will gain more confidence and you will know your son inside out.

I hope this helps, and if you want any more advice just ask.  I might not see it straight away but I will reply.  I had another mam supporting me and I found this very helpful at first until I gained the confidence to do it myself.

Stay strong and keep going, you will do an amazing job. Xxx

I'm sorry you're feeling so lost at the moment. 

If I can start by asking you not to see things in terms of high or low functioning, I think that may help you somewhat. Those are not particularly helpful terms. With autism being a spectrum you might find that he seems high functioning in some areas and low in others, and that this is unique to him. Likewise things may change throughout his life. He may find that some things become easier to cope with, and some more difficult. Additionally, how he responds to the world around him does depend, of course, on the world around him. Autistic people can get by relatively easily when there are few stressors and they're receiving support, but adding in stress and difficulties can make the autistic traits much more pronounced. So, he may seem better in school holidays when he has freedom and support, but more autistic during the school term, for example. My point being, if is unpredictable and changeable, so boxing him into high or low functioning will limit both your perception and how he is treated. It does everyone a disservice.

I know of autistic individuals that became verbal at 5 or 6 heads old, and by 7 or 8 you wouldn't know that they were such late talkers.

I know it's hard, but please don't be sad about your son's development. I'm sure others will be along with their own advice, too.