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Thread: Autism?

  1. #11
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    Here’s the reply Mick

    Needs to get a EHCP from the local authority. This looks at their educational,*health and social needs*and sets out the additional support to meet those needs.
    They can take anything up to 2 years to push through though
    If they've already got some support they've likely started down this path but the full EHCP is the key that opens doors to whatever he needs
    Plus, parents know their kids best. If they feel he isn't getting the right support, persist and don't let them be fobbed off

  2. #12
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    Quote Originally Posted by boingy View Post
    Here’s the reply Mick

    Needs to get a EHCP from the local authority. This looks at their educational,*health and social needs*and sets out the additional support to meet those needs.
    They can take anything up to 2 years to push through though
    If they've already got some support they've likely started down this path but the full EHCP is the key that opens doors to whatever he needs
    Plus, parents know their kids best. If they feel he isn't getting the right support, persist and don't let them be fobbed off


    Best to pay for a private diagnosis as we did - approx £500 from memory! The SEN and Disability Code of Practice (2015) is quite clear on this point - there is no basis in law for a Local Authority to reject a professional diagnostic report simply because it was privately obtained.

    Persisting is quite right but again there are schools who cater for special needs like this and schools that don't do hardly anything/bare minimum as they simply do not have the resources so you could persist all you like! Same with a child who is talented and gifted.

    In my area there are six state secondary schools - two poor - two good ( one you have to prove you go to church and be in catchment ) and one that is academically selective so you take the 11+ exam. The special needs varies in these schools too from excellent to bog standard average/poor just like the academics.

  3. #13
    Some great advise on here like 'walk over broken glass' 'persist' 'every school is different' and most important every child is different .

    Someone else I missed out on who to get involved. The school will have a Special Educational Needs Coordinator (SENCO) and it is they who will usually provide the initial assessment. Ask to see it. Challenge it if you don't agree. They are trained to do the job and should at the very least be sympathetic.

    On a side note there is a brilliant 4 series BBC drama 'The A Word' still available on the iPlayer. One of the big dilemmas the parents have that causes lots of family friction is what sort of school to send him? One wants him to go to a specialist school the other a 'normal' school (whatever that is.)

  4. #14
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    Quote Originally Posted by 9goals2hattricks3pen View Post
    Some great advise on here like 'walk over broken glass' 'persist' 'every school is different' and most important every child is different .

    Someone else I missed out on who to get involved. The school will have a Special Educational Needs Coordinator (SENCO) and it is they who will usually provide the initial assessment. Ask to see it. Challenge it if you don't agree. They are trained to do the job and should at the very least be sympathetic.

    On a side note there is a brilliant 4 series BBC drama 'The A Word' still available on the iPlayer. One of the big dilemmas the parents have that causes lots of family friction is what sort of school to send him? One wants him to go to a specialist school the other a 'normal' school (whatever that is.)


    Good points! If it was my child and have been in that position, I would pay privately to get the professional diagnosis as otherwise you go around in circles. You are right too every child suits a different school whether it's Montessori, Mainstream, Specialist or Private with smaller classes. It's like everything in life - if you want the best you have to pay for it ( obviously if affordable ). Bit like an operation - wait 18 months on average now with the NHS or go private if affordable and have it pretty much straight away. That's life!

    Best to get sorted asap. I know from experience from 12+ many kids would rather they be considered normal and find extra help embarrassing. Shouldn't be like that but sadly, that's the case.

  5. #15
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    Really appreciate all the advice thanks lads.

  6. #16
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    Autism is now called Autism Spectrum Disorder because it is a spectrum. It just means that the brain of an autistic person is wired just a little bit differently from the brain of an "ordinary" person. Because it is a spectrum every person with autism is different from every other person with autism and it is impossible to make broad statements that an autistic person will act in a particular way or have particular problems or need particular therapy.
    On the one end of the spectrum you may have a non-communicative child who will scream at you if you take away their favourite toy that they are completely obsessed with, and at the other end you may have a perfectly normal child who has a few quirks such as he never looks people in the eye or he has difficulty recognizing normal social cues.
    Until recently, the idea of an autistic child was linked to the highly dysfunctional end of the spectrum but now it is understood that a lot of high achieving and highly intelligent people are on the autism spectrum. Highly intelligent autistics is probably where the idea of the eccentric professor comes from. Those that are highly intelligent used to be labelled as having Asperger's syndrome. Some very famous people have been suspected of having Asperger's such as Albert Einstein, Dan Aykroyd and Anthony Hopkins. Asperger's syndrome is now seen as just a very high functioning form of autism coupled with very high intelligence.
    Just because the child is labelled as autistic doesn't mean they will have difficulty in school or in life. It may mean they cannot function at all in school or it may mean they are top of the class or it may mean somewhere in between those two extremes.. They may seem very odd or eccentric or they may have very mild behaviours that would be almost impossible to spot by anyone who doesn't spend a lot of time with them. They may need intensive therapy just to learn how to talk or they may only need to be gently reminded from time to time that they really should look somebody in the eye when they're talking to them. They may be completely incapable of dealing with the noise and stress of a typical classroom or they may sit there quietly and obediently because the subject of the class fascinates and stimulates them.
    So a diagnosis of autism by itself is not that useful. What is more important is recognizing which situations may cause the child to act differently from what is normally expected so that the situations can be anticipated and the child child can get the help necessary to deal with those situations in a socially acceptable manner. They may need to be pulled out of the class and have intensive one-on-one coaching with a highly trained psychologist or they may not need any help at all. It really depends on the child. So make sure you get a solid diagnosis and solid understanding of what it specifically means to your child so that you can help steer the child through his school years and into adulthood with the right treatment and advocacy. Autistic children can be very successful if given the right help.

  7. #17
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    Dec 2007
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    9,138
    Quote Originally Posted by mickd1961 View Post
    Really appreciate all the advice thanks lads.
    Hey Mick,

    Sorry to hear your grandson is struggling at the moment. However, if you've already got a diagnosis at 4 then it sounds like you are already half way there to getting help.

    Diagnosing autism is incredibly difficult and complex. My son has been assessed by various agencies since he was 2. Five years later and we still don't have a final diagnosis. As somebody mentioned above, you should seek the school to get an Educational and Healthcare plan in place. Depending on where you live, this might be easier said than done, but once in place, it'll provide the resources your grandson needs until he finishes his entire education.

    He's still incredibly young and it's such a huge milestone for them starting school. Hopefully after a few weeks he'll have settled and will come out of his shell more. It's also important to remember that the autism spectrum is wide and varied that we're all on the ladder somewhere. What we consider an individual 'quirk' would most likely fall within the spectrum.

    The good thing for your grandson is that schools and teachers have lots of experience dealing with children with autism. Whereas once children would've been seen as naughty/disruptive/unmanageable, they should now have resources in place to accommodate his needs.

    All the best anyway, I know how stressful it can be a times.

  8. #18
    Quote Originally Posted by Calgarybaggy View Post
    Autism is now called Autism Spectrum Disorder because it is a spectrum. It just means that the brain of an autistic person is wired just a little bit differently from the brain of an "ordinary" person. Because it is a spectrum every person with autism is different from every other person with autism and it is impossible to make broad statements that an autistic person will act in a particular way or have particular problems or need particular therapy.
    On the one end of the spectrum you may have a non-communicative child who will scream at you if you take away their favourite toy that they are completely obsessed with, and at the other end you may have a perfectly normal child who has a few quirks such as he never looks people in the eye or he has difficulty recognizing normal social cues.
    Until recently, the idea of an autistic child was linked to the highly dysfunctional end of the spectrum but now it is understood that a lot of high achieving and highly intelligent people are on the autism spectrum. Highly intelligent autistics is probably where the idea of the eccentric professor comes from. Those that are highly intelligent used to be labelled as having Asperger's syndrome. Some very famous people have been suspected of having Asperger's such as Albert Einstein, Dan Aykroyd and Anthony Hopkins. Asperger's syndrome is now seen as just a very high functioning form of autism coupled with very high intelligence.
    Just because the child is labelled as autistic doesn't mean they will have difficulty in school or in life. It may mean they cannot function at all in school or it may mean they are top of the class or it may mean somewhere in between those two extremes.. They may seem very odd or eccentric or they may have very mild behaviours that would be almost impossible to spot by anyone who doesn't spend a lot of time with them. They may need intensive therapy just to learn how to talk or they may only need to be gently reminded from time to time that they really should look somebody in the eye when they're talking to them. They may be completely incapable of dealing with the noise and stress of a typical classroom or they may sit there quietly and obediently because the subject of the class fascinates and stimulates them.
    So a diagnosis of autism by itself is not that useful. What is more important is recognizing which situations may cause the child to act differently from what is normally expected so that the situations can be anticipated and the child child can get the help necessary to deal with those situations in a socially acceptable manner. They may need to be pulled out of the class and have intensive one-on-one coaching with a highly trained psychologist or they may not need any help at all. It really depends on the child. So make sure you get a solid diagnosis and solid understanding of what it specifically means to your child so that you can help steer the child through his school years and into adulthood with the right treatment and advocacy. Autistic children can be very successful if given the right help.
    Brilliantly summarised CalgaryB - Mick I have a 16yr old who I knew within the first 18mths of his life was a little bit different to his peers, really struggled with sensory overload and all social behaviours had to be learned vs the natural cues that others pick up on through time. Did your grandson go to nursery? If so the SENCO lead there will no doubt already be involved in the transition into school life but to me that's merely "official" endorsement of the situation whereas the parents instinctively know what works best. It may sound needy but creating an environment that puts the child at ease gives them the best chance of learning how to do school and this usually comes from a teacher who connects well, so if that isn't the case then a move may be needed. Sorry if I'm stating the obvious mate.

    WCV

  9. #19
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    Sep 2021
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    Post

    Hi Mick
    Many good posts on this already, not least because anyone who has experience of a child on the spectrum will doubtless empathize with the issues your family will likely face and wish to offer support/advice. With this in mind, I will offer my own experiences that may help.

    Our youngest son, who is now 18, has aspergers. We first became aware that something might be amiss when he was at nursery but, obviously, many children do not settle easily at first and it is harder to formally diagnose at this stage. When he moved into his first year at school his issues only worsened and a friend suggested that he may be on the spectrum which led us to investigate further. Through our own efforts and research we decided that he may well have aspergers. One of the people we found useful was Tony Attwood and I recommend you check out his books or site for more background on aspergers particularly. We downloaded some test questions from various sites on aspergers and used this in discussions with both his school and GP. Ultimately this led to us gaining access to the local childrens clinic and an O/T as well as him getting a Statement of Special Educational Needs (since replaced by the EHCP).

    Regardless of having an ECHP however (which is a must-have if you are to get any help at all), so much depends on the individual county councils, individual schools and individual teachers. We have met some brilliant people but they have all been hampered by lack of funding and ever increasing workloads. Some SENCO teachers have been really good whilst others have obviously done a few courses but are proof that "a little knowledge is a dangerous thing". The then government proclaimed that "every child matters" but -surprise, surprise-this was an empty tagline with no money or resource to support it and, as we are all aware, funding for education-particularly for those with special needs-has been continuously eroded. Anyway, it became obvious that his particular school could not meet his needs and so we made the decision when he was around 9 to take him out of school and home school him. Believe me, this was not a decision we took lightly. Apart from anything else, my wife had to give up work which then caused us ongoing financial difficulties. Importantly, we still continued with annual reviews and his EHCP but any government promises of a "personal budget" to help support us did not materialize and we had a long and frustrating struggle before we finally got funding for 6 hours home tuition. The government spend 5K-8K per child per year if they are in school but if you home school you get jack. My argument for funding was that we only took our son out because the school system was failing him and so to not help fund his education was discrimination.

    I have tried to post some tips/advice that may help but maybe I typed too much and system only accepts so many words so will try and add as a separate post!

  10. #20
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    Sep 2021
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    2,366
    Hi Mick
    As others have said, the most important thing is for him to get an EHCP. In order to get this you need a formal diagnosis. In our own case, we picked up that something was amiss when our youngest (now 18) went to nursery but it was not until he began having issues in reception class and a friend suggested possible aspergers, that we researched it further. In the end we downloaded some aspergers tests from the internet and used these in support of our discussions with both his GP and the school. This resulted in him being referred to an Occupational Therapist at the local childrens clinic and to him getting his formal diagnosis of aspergers. The Statement of educational special needs (since replaced by the EHCP) then followed.
    Sadly, whilst an EHCP is a need-to-have, so much depends on your particular local county council, the individual school and individual teachers. We have met some brilliant people but they have all been hampered by lack of funding and increased workloads. Government funding for education has been continually eroded for years and particularly funding for those with special needs. Whilst some SENCO teachers have been excellent, others have clearly attended a few courses and are proof that a little knowledge is, indeed, a dangerous thing. The one thing that is almost a certainty is that you will have to be prepared to fight for any help/funding and be prepared to put up with a lot of frustration and being passed from pillar to post but hang in there!

    I had attempted to post some tips/advice for those with children on the spectrum but am new to this forum and I either typed too much or it timed out and-despite auto-save-I lost it all! Will try and put on a separate post

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