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

Sorry posted in your place!

Hi,

In regard to what Pretty Woman mentioned we also offer the following information on behaviour and strategies:

http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx 

I hope this proves to be useful

Thanks,

Nellie-Mod

I am so sorry to hear your story of your son. It sounds like you have had a very traumatic and isolating time as a family. We have good days and bad days and it is all a bit of a rollercoaster. Since I posted this, I have now called our regional CAMHS where our daughter has been referred to - they have taken all into account and have agreed to see our daughter next week for therapy. The therapist I spoke to things it is unlikely that it's ASD and more likely to be anxiety - generalised and anticipatory anxiety although there are seperation issues as well. Things have spiralled quickly so they believe time is critical and also believe that they need to intervene now and it may only be a short term intervention. she has settled better the last 2 nights in her room and not elsewhere as we were resorting to as she seemed agitated. Massage the last 2 nights has helped. Let's hope we can find a way of helping her manage this as soon as we can. Thank you xx

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.  

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.  

Thank you. Was very out of the blue. First issue was in May when she complained of being sick while on a family trip away to a theme park. Looking back she was clearly anxious. Then when she was due to return to school after the holiday she complained again of feeling sick. She then for 3 weeks increased the resistance to going to school - had been forced to go in many times, teachers getting into cars with her and trying a number of different approaches but it kept escalating until we had to stop forcing her to go in and consider a different strategy. Since then she has also avoided other activities - brownies, dancing, shopping trips - she was a very active child before all this - dance shows, school choir etc, bright, conscientious, polite, no behaviour issues...   Gradually she then started to have meltdowns both tantrum style and panic attack like - lasting a few hours. They have increased and she is having terrible trouble settling at night. Have tried massage lavender baths mindfulness but still huge problems - gets extremely agitated in her room with her clothes starts scratching - so we have tried removing her from her room letting her relax but it can be midnight most nights before she is asleep. We also have a 7 year old who is very scared at times by his sister's behaviour. My husband and I are exhausted and feel so helpless. CAMHS have referred her for an asd assessment and therapy but both have long waiting lists. We are meeting with a local autistic organisation next week which is good.....but meanwhile our family is at crisis point ......

Hi GillsD,

I'm sorry to hear about your current situation. I've posted some links below which may be useful to you.

To find out if your son/daughter has autism/Asperger's syndrome they would need to go for a formal diagnostic assessment. This section provides further information on getting a diagnosis:

Hi, welcome.  Give us some more details about your daughter if you don't mind? Autism can be harder to diagnose in girls. So your present situation is that they suspect autism but you'll be on a waiting list because of government cuts.  It is worth considering learning all you can as a family about autism, despite not having a diagnosis if you think it will help your daughter and you all as a family.  Check out the home page and the posts.  There's tons of relevant info which you can access.  Ask anything you want whenever you want.  We do understand.  If you do take up my suggestion can I suggest that you don't try to learn too much at once or you'll be overwhelmed?  Bite sized chunks of info is best.