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aspergers syndrome advice please?

My son Isaac is 3yr 5m. He was referred to speech th at 15m for no babbling then referred to hospital at 2 for social and communication problems. Seen paed twice now and attended special group weekly for language.



We saw paed today and discovered he has hypermobility as well as hypersensitivity. She also suggested aspergers syndrome. That would make sense with how Isaac is regarding his obsession with numbers, his lack of imaginative play and his lack of social skills.



Although saying that he started nursery no problems in Jan. They are observing him for paed now.



Any advice/experiences please? Its all a bit daunting!



Xxx

Replies

  • My son is now almost 13 but is most probably an aspie (though not diagnosed for a variety of reasons). He was late developing speech, has poor social skills, poor organisational skills, excessive interests in certain things, sensitivity to some sounds and sensations, food problems and displays repetitive behaviour when stressed. His assessments have been done via school starting in juniors when it became clear it was not a phase or something he was growing out of, and have always come back borderline. The reports say he displys autistic traits but does not quite tick all the boxes for a statement via the LEA. The SENCO at his senior school says he comes across as having Aspergers and a couple of people with diagnosed children have said the same. We have been advised that since his condition is relatively mild a diagnosis may do more harm than good because he will be labelled as "special needs" all his life but will not qualify for significant extra help. I have questioned whether or not to go to the dr a lot but we are leaving it for now to see how he gets on. As he becomes more self aware we have been able to explain the autistic spectrum a bit (against the advice from school who say not to tell him he has a problem but he was getting upset at being "weird" and discussing it seemed right) and we are helping him cope up to a point. I think you develop a way of dealing with your child that works for you and since I've accepted that he is not "normal" it has been so much easier. I communicate with him on terms that work now rather than trying to fit him into a particular mould that society deems OK. I can tell when a meltdown is imminent and act to prevent or at least lessen it. The hard part is dealing with other people who don't get the fact that a good clip round the ear, being made to talk to people/stop swaying/organise himself etc is all that is needed. The same people would think you were mad if you suggested punishing a wheelchair user for being unable to walk! On the bright side he is a wonderfully affectionate lad to those he trusts, he is clever, and knowledgeable about his specialisms and due to being slightly outside his peer group he has not developed the hard edge that a lot of kids his age seem to have. He'd rather be at home with me than out goodness knows where which means I know what he's up to! This is just my experience and I don't really know if it is any help or not, but I'm always willing to share.
  • Thank you it is good to hear from someone further down the line. I worry for Isaac when it comes to school and worry he Will be a bit of an outcast! He is boarder line and i have a feeling we Will be in a similar situation to you.



    Thanks for sharing!



    Xxx
  • Im a mainstream teacher and several of my pupils have aspergers, as do both of my brothers. You will find that even if your son is diagnosed with aspergers there are no hard and fast rules as to what to expect. Aspergers is an Autistic Spectrum Disorder. A person who has aspergers thinks very differently to someone who doesnt have aspergers. However, the traits and the severity of the condition vary from person to person. My brothers, for example, both have aspergers. Brother 1 seems, to an outsider, to just be very very driven towards doing things he wants to do and he struggles to remain interested in anything else. He refuses to compromise and never sees anyone elses point of view, and at the age of 24 has yet to have a long term girlfriend due mostly to his refusal to compromise on anything. However, if you met him, you would not know he had aspergers, he is a lovely person who seems very 'normal' but selfish in certain respects. Brother 2 is completely different. From the time he was a little baby he has struggled with social concepts. As a young child he had a phobia of buttons and would scream if he was dressed in anything with buttons on. He would only eat from one bowl (it had ducks on it) and would only eat certain foods - often having the same thing over and over again. He struggled to fit in at school and was labled naughty, As a nineteen year old teanager now he has the emotional maturity of a 14 year old. He lives in a complete fantasy land and never seems to form lasting friendships and his friends tend to be fair weather friends. He has very limited emotional empathy for anyone and in his world everything is black and white - there are no shades of grey. Brother 2 has had a much tougher time socially than brother 1, and he certainly has more Autistic traits than brother 1. Brother 2 is clever though, his GCSE grades do not reflect just how intelligent he is. (Mostly because GCSE's are not suitable courses for most children with ASD - but dont get me started on that!!) Anyway, the good news is that schools are getting much better at understanding ASD and how to help pupils not only to access the curriculum, but also to learn how to fit in socially in order to ensure that pupils with ASD can go on to be sucessful. The trouble with ASD is that there are no rules as to what to expect, and every ASD child is different. Because they look 'normal', they tend to get labled as naughtyl even now, when I talk about brother 2's odd behaviour people always try and tell me its because that is just his personality! The best thing you can do for your son is to get a diagnosis. Once you have that, the school have to ensure his needs are met. Without a statement, most schools will try their best, but a statement ensures they have a legal obligation to provide your son with support and differentiation.

    I dont know if any of this is helpful, but if your son does have aspergers please know it is not the end of the world. My brothers are lovely people, and they are both aware of their condition and why they think differently to other people. As a result they are both leading happy and full lives. It hasnt been an easy ride, but at the same time I know my mum would tell you that she wouldnt change them for the world. There are lots of support groups that you can join, and the condition is becoming more and more high profile which will only serve to help those who have ASD. Good luck xxx
  • My son, also called Isaac has been under the paed for 2 1/2 years, we have been told it is highly likely he has either high functioning autism or aspergers, he is 4 this month and we are still waiting to see, his speech is ok but his communication and understanding of language are behind, he also has hypermobile joints and sensory processing disorder, it is a long road which is full of ups and downs and the best thing you can do is to surround yourself with people who support and understand what you are going through, feel free to pm me anytime if you want a chat xx
  • hi my daughter is almost 6 and we are just waiting on the feedback meeting to get a diagnoses (if they will diagnose her so young!)

    we habve seen 3 people from the autitics team and all the reports state the same-aspergers BUT they all have to come to agreement on the day.

    katelyn first got referred in october last year so its taken less than 6 months for us.

    katelyns prob;ems are atound eye contact, she doesnt seem to "get" if you are listening to her or not!, and she cannot deal with change AT ALL! she came home from school the other week due to a change of teacher!

    Katelyn talked very early and can read VERY VERY well. she has OCD too.

    if you want to talk any time that would be cool. i dont know anyone else with a child on the autitic spectrum x
  • Hello,



    Sorry to g/c, I saw the thread on the homepage.



    There is a book called "All Cats have Asperger's Syndrome" by Kathy Hoopman which is a lovely book to look at with Asperger's children as an introduction and to help understanding of AS.



    I don't have any children of my own but have read this as a teacher and found it really helped me understand some of the behaviours of children with AS.
  • Thanks for advice and insight! So good to know i'm not alone in my/our journey which sounds like its going to be far from simple!



    Hayley and loobys mummy i Will be pm ing you soon, so good to have others with similar experiences. I have lots of mummy friends but non with a child on autistic spectrum. On my phone atm but laptop fixed so Will pm you soon!



    Chickensoup thanks so much for the recommendation, i have bought a copy to read and pass around the family! I also noticed she has written other books.



    Xxx
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