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 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

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