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I wouldlike your opinions

sonia

My son is 9, I have known there is something different with ben for a long while. It used to be anger and lashing out but now he is 9 things are different. we were given a diagnosis of autism/aspergers. This has since been revoked because he displays none of the signs at school.

The ongoing unusual behaviours are:

He has no toys, does not want any toys even for christmas. This is after 5 years ofobsessive collection of lego (We have about £3000 worth of it) He asked for and was bought a number of lego sets for christmas.He has never opened them. He wants me to sell it all and says that he woke upon christmas morning and thought I don't like lego anymore.

He knows how to be sociable and is liked in class at school. Outside of school he is never invited anywhere, has one friend, a girl from nursery who is still in his class in year 5 who he sees out of school once every 2months or so.

He likes to sit in his room, his latest obsession is minecraft. if I force him to go out somewhere he will have "meltdowns" as I call them and then pretty much I will suffer most of the day.

He is amazing at maths, and is in an able maths class at school. But he cant put his working out down, its in his head

He is below average in english and handwriting

He will only read fact books to the point that he refused to read at school if he couldnt read fact books

He has a strong sense of injustice and often it is this that will set of a meltdown. 

His meltdowns generally mean, shouting abuse at me, kicking objects around the house, banging, kicking the car etc. This is an improvement because it used to be kicking me.

If we go out he will get edgy after about 2 hours asking when we are going home. When we go on holiday he is the same but wherever we are staying becomes his "new home" so he will want to go back there after a while. 

he prefers his own company and the computer

In school the only outward sign he has shown in the last year was chewing of his clothes,but at the moment that has stopped too. He comes out of school like a whirlwind. If I take him straight home and he can go to his room he is ok,but if I try and take him anywhere after school he will lose it.

I don't know where to turn anymore. He has had his diagnosis taken away, I don't want to keep taking him places and trying new doctors, because maybe they are right. Maybe he doesn't have any kind of behavioural issues. My concern is that it is his 11+ year, he is going to fly in maths because I don't think they need to show their working out but he is going to definitley struggle in english. and in the future if he cant show his workings what will happen to his exams. Am I just over worrying, should I pursue it or just leave him be to grow up however that may be. It is so hard being a mum!

  • Hi - what has happened to you both is seriously wrong.  Consider videoing him at home if he'll tolerate it. Also routine is v important to keeping an autistic child grounded so try to stick as much as poss to 1.  Also when there are changes then if at all poss prepare him well in advance verbally, in writing if it works for him, and also pictures, such as where you're going on holiday, when etc.....as much detail as poss.  Good luck

  • There's nothing like someone disbelieving you to make you wonder if you are imagining things.

    He sounds adorable.

  • Youv'e got to laugh, I've just found him counting his fingers silently. When I asked him what he was doing he said he likes to work out how many letters words have. if they are evn he likes them if they are odd he hates them. kids

  • Thank you for your advice, I have kept a diary beforewhen things were much worse but I will do it again and then maybe I can see for myself the difference in behavour. There are so many days when I think,is there really anything or is it just me and then there are days when he is bouncing off the walls making silly incomprehensible noises and no matter how much you ask he just can't be quiet that reaffirm my belief that there is something there

  • sonia said:
    They did watch himin school and did the ados test (I think thats right) the first time they said he scored high the second timewhen they did the test at school he scored lower

    The ADOS-2 is only 77% reliable in high-functioning children.  The DISCO would be more in-depth and any such clinical tool is only intended to be part of the assessment process not to make the actual clinical decision on.

    Answering questions or completing tasks can change with autism depending on your stress levels and environment.

    As above, watching at school means virtually nothing, particularly when the child is the passive type.  You wouldn't believe the difference between my 8yo behaviour from school and home.

  • He sounds like a typical child with ASC to me.

    I can't see how they can take away someone's diagnosis.  Are they saying they misdiagnosed him, or is it the (erroneous) view that he outgrew it?

    Go to your GP and ask for a re-referral/second opinion.  You are within your rights.

    As for the failure to show the same behaviour at school:

    http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx

    I have commented before about wondering whether the government has a hidden agenda to fail to diagnose as many as possible.  Now it seems they are removing diagnoses where they can too.  Some sort of directive to CAMHS and child development centres no doubt.

    Duh!  Autism is a lifelong condition!

  • quote "we were given a diagnosis of autism/aspergers. This has since been revoked because he displays none of the signs at school."..

    are you serious here ? two counts of malpractice here !

    1.) giving you a misdiagnosis in the first place

    2.) every half expert, knows including Tony Attwood, that it is very common for children with autism to be different in a school environment than at home or elsewhere. Your child if behaved at school is releasing social stress at home. With Aspergers you have a kind off two type personality, rational or meltdown normally you will see the switch when the environmental structure changes around them, especially if too fast. Your child structure in school will be more structured and he will know were he is there now, but you will see the underlining condition coming out at home and elsewhere.

    Sonia you need to keep a diary and get him reviewed again by a child psychologist and maybe speak to a solicitor for advice about damages for stress and possible malpractice.

     

     

     

  • They did watch himin school and did the ados test (I think thats right) the first time they said he scored high the second timewhen they did the test at school he scored lower