10 year old girl - sudden potential ASD diagnosis - please anyone similar

Good morning

After a few months of high anxiety with our 10 year old girl - seemingly out of the blue - we have now been told she may have ASD. From nothing to a situation which has spiralled every day to the point that she didn't attend school for the last month, to problems sleeping, major meltdowns (one which ended up in A and E, bad idea on reflection but we were frightened!)...........how has this been masked for so long? We are in a terrible state as a family, walking on eggshells, life being put on hold as our daughter won't do a lot of things, a 7 year old boy who is petrified and despite CAMHS being involved have now been told everything will take months.............

Parents
  • Hi, this is exactly like my own story, 3 years ago.  My son was very similar was lovely, did lots of clubs, was well behaved at school, had lots of friends then went to high school at 11 and had a 24 hour bug.  From here he hecame obsessed that food would make him ill, he stopped going out, dropped all his hobbies and many of his good friends.  He didnt want to go to school, every night had severe anxiety that went on until morning  with panic attacks.  He started self harming, was suicidal, devloped OCD (This started off with germ and contamination worres - but lately has become about constant thoughts someone will try and hurt his family or he will hurt them).  We went private whilst waiting 5 months to see cahms.  The Dr. gave him various meds- all of which had terroble side effects and now he is just on propanalol.  He has been under cahms seeing them fairly regularily and now they think he might be on the spectrum and we are awaiting a team assessment.  

    Our life has been hell these last 3 years, watching my son suffer and not being able to fix it as well as the affect it has had on his younger brother and our marriage.  Both me and my husband have had counselling, and been on meds ourselves - something Ive never done in my life.  

    There are a few things I would do differently though, I used to worry constantly that it was my fault and I had done something wrong, now I know this isnt true - but it took a long time to stop believing this.  I would tell more people what was going on, we told very close friends only and it was hard, having to turn down invitations and not really going out anymore,  I have lost some friends, and mothers that I knew well because my son was friends with their son have blanked me in the street because of his behaviour at school or whatever they have heard.    I also didnt tell my close family everything that was going on straight away and since doing that they are more understanding of his behaviour.  If your daughter is having a melt down, knowing when to let them get on with it and walk away takes time.  We always used to sit with my son whilst he was panicing or going into a rage that could last hours and could wreck the house.   Now we ask him if he wants us to sit with his when he is having a panic attack and we walk away when he is raging warning if he breaks /messes anything us he will help tidy it and or pay for damage.  I would often try to reason with him about his worries but now I dont I mostly keep quiet if he is becoming aggitated/looking for a fight/or anxious about something.  The night anxiety is difficult.  Its trial and error as to what will calm them down - my son listens to radio 4 and has it  very loud when he goes to sleep so as to block out the constant racing in his mind, he also watchies films to distract himself and now he will switch these off on a school night and change to his radio.  Saying that we still have nights like last week where he is in such a state my husband was out walking with him till 5 am to get him to relax.  But mostly the night thing is very much better.      

    We also made sure that one of us always sat or did something with his younger brother whilst stuff was going on or we would take him out of the house if it wasnt too late.  My son has heard some horrendous things and it definatley has affected him, he can get quite emotional and down sometimes with how our homelife but on the whole I think he has coped well.  

    You will hear this alot but you have to take time when you can for yourself.  Go out with a friend on the weekend.  Enjoy a hobby.  My work is my sanctuary- I am a teacher and I love my job and when Im at work its so full on I rarely have time to think about home, which I used to feel quilty about but now I dont.  Can you get restbite?  We send me oldest son to family for long weekends, he gets anxious here but has learnt to take himself away and holds it together a bit better and our family have a lovely restful few days.      

    We were referred to the carers centre nearby who have been a god send in terms of meeting similar families and learning more about ASD and how to cope with it.  Its a very lonely time and no one will really understand what you are going through, try to see if their is a carers group in your areas for families like your self, maybe the local autistic organisation will have groups for parents.   

    That seems a bit of a ramble there are loads of others things we have learnt over the last 3 years mostly through self research.  One book I did find really hopeful was 'The Explosive child' by Ross Greene. The NAS also have some really good booklets on ' Managing anger - family seminar booklet.  

    Hopefully some of this was useful.  

        

     

Reply
  • Hi, this is exactly like my own story, 3 years ago.  My son was very similar was lovely, did lots of clubs, was well behaved at school, had lots of friends then went to high school at 11 and had a 24 hour bug.  From here he hecame obsessed that food would make him ill, he stopped going out, dropped all his hobbies and many of his good friends.  He didnt want to go to school, every night had severe anxiety that went on until morning  with panic attacks.  He started self harming, was suicidal, devloped OCD (This started off with germ and contamination worres - but lately has become about constant thoughts someone will try and hurt his family or he will hurt them).  We went private whilst waiting 5 months to see cahms.  The Dr. gave him various meds- all of which had terroble side effects and now he is just on propanalol.  He has been under cahms seeing them fairly regularily and now they think he might be on the spectrum and we are awaiting a team assessment.  

    Our life has been hell these last 3 years, watching my son suffer and not being able to fix it as well as the affect it has had on his younger brother and our marriage.  Both me and my husband have had counselling, and been on meds ourselves - something Ive never done in my life.  

    There are a few things I would do differently though, I used to worry constantly that it was my fault and I had done something wrong, now I know this isnt true - but it took a long time to stop believing this.  I would tell more people what was going on, we told very close friends only and it was hard, having to turn down invitations and not really going out anymore,  I have lost some friends, and mothers that I knew well because my son was friends with their son have blanked me in the street because of his behaviour at school or whatever they have heard.    I also didnt tell my close family everything that was going on straight away and since doing that they are more understanding of his behaviour.  If your daughter is having a melt down, knowing when to let them get on with it and walk away takes time.  We always used to sit with my son whilst he was panicing or going into a rage that could last hours and could wreck the house.   Now we ask him if he wants us to sit with his when he is having a panic attack and we walk away when he is raging warning if he breaks /messes anything us he will help tidy it and or pay for damage.  I would often try to reason with him about his worries but now I dont I mostly keep quiet if he is becoming aggitated/looking for a fight/or anxious about something.  The night anxiety is difficult.  Its trial and error as to what will calm them down - my son listens to radio 4 and has it  very loud when he goes to sleep so as to block out the constant racing in his mind, he also watchies films to distract himself and now he will switch these off on a school night and change to his radio.  Saying that we still have nights like last week where he is in such a state my husband was out walking with him till 5 am to get him to relax.  But mostly the night thing is very much better.      

    We also made sure that one of us always sat or did something with his younger brother whilst stuff was going on or we would take him out of the house if it wasnt too late.  My son has heard some horrendous things and it definatley has affected him, he can get quite emotional and down sometimes with how our homelife but on the whole I think he has coped well.  

    You will hear this alot but you have to take time when you can for yourself.  Go out with a friend on the weekend.  Enjoy a hobby.  My work is my sanctuary- I am a teacher and I love my job and when Im at work its so full on I rarely have time to think about home, which I used to feel quilty about but now I dont.  Can you get restbite?  We send me oldest son to family for long weekends, he gets anxious here but has learnt to take himself away and holds it together a bit better and our family have a lovely restful few days.      

    We were referred to the carers centre nearby who have been a god send in terms of meeting similar families and learning more about ASD and how to cope with it.  Its a very lonely time and no one will really understand what you are going through, try to see if their is a carers group in your areas for families like your self, maybe the local autistic organisation will have groups for parents.   

    That seems a bit of a ramble there are loads of others things we have learnt over the last 3 years mostly through self research.  One book I did find really hopeful was 'The Explosive child' by Ross Greene. The NAS also have some really good booklets on ' Managing anger - family seminar booklet.  

    Hopefully some of this was useful.  

        

     

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