Autistic son

Discussion in 'Parents Forum' started by liamt, Sep 18, 2015.

  1. liamt

    liamt
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    Hi guys,

    after a few months of testing and analysis my son has been diagnosed with autism. he is 4 (birthday last month)

    its at the low end of the spectrum we have been told, and even though we suspected it, its still a hammer blow.

    any tips or advise?

    we have held him back a year which means he isnt starting school now, he will do another year of pre-school. he was born in august and was 7 weeks premature so really was in the wrong year developmentally anyway. but he struggles to really play with other children and his communication isnt as good as it should be.

    its a shame as he is such a lovely little lad. he also seems to be good with empathy, i.e. if he sees someone hurt themselves he goes to help them and is very affectionate, which i thought was uncommon with autism.

    i have always suspected i am on the low end of the spectrum.

    thanks guys.
     
  2. shodan

    shodan
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    No personal experience but I am aware that autism is a catch all descriptive term so his condition may be as serious as it sounds.
    But do have a Google and speak with the specialists about forums and local support groups..
     
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  3. nheather

    nheather
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    My son is diagnosed with aspergers and adhd (low end high functioning end of the spectrum).

    He was diagnosed at about 3 years old and is 21 years old now.

    There have been some tough times and clearly my wife and I have 18 years of hands on experience. So we know a lot, too much to post here.

    One of our biggest worries was education because there was talk of special schools and a low predicted attainment at first. But to give you some idea of what his possible with a lot of support :

    He got 12 GCSEs (2x A*, 8x A and 2x B)
    He got 4 A Levels A*AAA)
    He is now studying for an MEng in Chemical Engineering at the University of Birmingham.

    Cheers,

    Nigel
     
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  4. IronGiant

    IronGiant
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    Thanks for posting Nigel, I was hoping you'd drop by. :thumbsup:
     
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  5. Trollslayer

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    In the semiconductor business I have met a few people with Aspergers (possibly autism as well) and they have found a niche where they can do very well and people there understand how to get on with them.
     
  6. nheather

    nheather
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    Indeed, a year or so ago I read a report that one of the top consultancy companies (Accenture I think) were activily recruiting people with Aspergers and Autism because they can come up with some original solutions that more traditional ordered thinking would miss.

    Cheers,

    Nigel
     
  7. liamt

    liamt
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    cheers guys. my apologies i forgot i made this thread!!!

    yeah, i know a lot of people in IT are on the scale, easier to work with machines than people etc.

    i think if he is he is on the low end, didnt help him being 7 weeks premature no doubt.

    cheers nigel, much appreciated the good news of your son doing so well

    i took the online test and got 32 out of 40, which likely means im on the scale too. probably where he gets it from!
     
  8. nheather

    nheather
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    Agreed. In my day, no one had heard of Aspergers. But having spent a lot of time learning about it so that I can support my son I can see that my dad definitely had it and that I certainly show a number of traits myself.

    Asperpers predominantly (but not entirely) affects males - I recall it is about 10:1 (male:female).

    My son (and my dad and me) exhibit the most common traits - good and maths, science and hard subjects. Not very creative, and not very good at squishy subjects. Good with facts and data. Rubbish with emotions and social interaction.

    But I have sat in a number of groups and although many fit that model, I have also seen children with are very emotional and like poetry. Being a syndrome there is no exact set of symptoms.

    I would suggest the first thing you need to do is to work on getting a statement so your boy can get support. There is a lot of stigma about getting a child statemented - many parents try and avoid it. But all it is a formal recognition that your child has a diagnosed condition and needs support. Once you have one it is very powerful for you.

    You will hear people say that getting statemented support is impossible. It may have got harder but even when my son was young I heard the same. My advice is to do you research so that you can write a really good application.

    That is what my wife and I did and we walked away with a statement giving him 20 out of 25 hours 1:1 support in the classroom. My son didn't really need that much but the school support department loved us for it because it almost paid for a full time TA that they could use for my son. but also for other children whose parent hadn't been so successful.

    Once you have the statement it stays with him throughout education. Examples of how it has helped

    At GCSE, A-Level Exams and Degree - 25% extra time, use of word processor, helper to prompt to keep him concentrated on the work

    At Degree - tons of stuff. An independent mentor to help him with academic and social problems. Digital voice recorder to record lectures. A scribe to take notes (which he has declined because he doesn't like that idea). Professional software like mind-maps and text to speech. A laptop (which we declined as the one he already had was better spec). A printer. £200 budget for support stuff - specific books, printer paper, printer cartridges. Warranty for his personal laptop. Preferential arrangements for exam resits.

    So I can't recommend getting a statement sorted out highly enough.

    Cheers,

    Nigel
     
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  9. liamt

    liamt
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    cheers nigel.

    well worth doing it seems! me and my wife had a chat and we agreed to try and use this to get him the best support we can. another family i know's son was borderline so they just carried on as normal, he now struggles a lot as a young teenager and has many problems.

    its odd as my son does a few things that seemed very non-autistic to me. he is very affectionate, loves hugs and cuddles. he is very empathic, always goes to help kids who hurt themselves. loves animals. etc. but as you say there are no hard rules for the condition.
     
  10. nheather

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    Having a statement is so powerful. Authorities sit up an listen when you have one and you can use it to metaphorically beat them around the head until they give in.

    Don't get fooled into it being a stigma like so many families do. Use it to your best advantage.

    Cheers,

    Nigel
     
  11. liamt

    liamt
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    cheers mate, yeah, we are going to try and push for extra help where we can. will get onto the statement, cheers for the advise!
     
  12. nheather

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    Do some research before filling it in. Your want to make your request as compelling as possible. You want to insist on mainstream education - don't them them push you towards special schools because they are really for extreme cases.

    My wife and I are both degree educated so can put a good business case together. My wife did a load of research and we ended up with an unusually high level of 1:1 support. When we met in support groups I used to comment on the unfairness of it. We would see children who needed more support from our son but they actually had none or very little. Other parents were staggered by the amount of support that we had got. I think it is so unfair that level of support is based not on what is needed but on how good the parents are at stating the case.

    Cheers,

    Nigel
     
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    Last edited: Sep 21, 2015
  13. BigStu1972

    BigStu1972
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    Can I ask why you suspected your Son was Autistic? What were the early signs?

    I have an older brother (46) who has Aspergers but wasn't diagnosed until much later in life. Up until then he was just called "a bit slow" . If he had been born today he would have been treated very differently and wouldn't be in the position he is in now.
     
  14. liamt

    liamt
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    my wife used to work in mental health so she really was the one to spot (he is 4 btw). things like covering up ears when its loud, struggling with conversations, lack of concentration, doesnt know how to play with other kids very well. but he is very loving, empathic and loves cuddles, which to me is the opposite of what i would expect from autism. he seems a lot like i was but i wasnt behind like he is, mainly due to my mum being a pushy bitch! :) these days you are told to let kids do everything in their own time and pace. so, still in nappies at 4! although he is often naked at home and uses the loo no problem.

    of course its almost impossible to say for definite right now. he is too young and isnt severe (i.e. he doesnt bang his head on the wall when frustrated). he is also a very happy little boy, laughs a lot and is generally in a good mood unless tired.

    i have the feeling many of us are on the autistic spectrum, we were just never tested. everyone seems to need a label and be put in a box now. just like when they brought in the test for depression and something like 50% of people failed it.
     
  15. BigStu1972

    BigStu1972
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    I think you're right, we do love labels in this day and age. How old was your son when your wife first suspected?

    Oh and where did you go to take the Autistic test?
     
  16. liamt

    liamt
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    about 3 i guess. he is behind on some stuff on his preschool report card. but his preschool think he might just be a bit behind. he is like me, unless he is interested in stuff he doesnt give a crap.

    i took the test here (seems almost the same as the one they sent home with him on friday):
    Autism Test | Aspergers | Health | channel4.com/kids

    i got 32 out of 40! eek. lol.
     
  17. BigStu1972

    BigStu1972
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    I took it myself and scored 10
     
  18. shodan

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    13 for me, but that is an interesting set of questions yet I think if you had the answers to the questions, you world have already reached the conclusion of the results prior to doing the test.
     
  19. liamt

    liamt
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    its a bit hard to fill out for a 4 year old too!
     
  20. Hpi_matrix

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    Be happy it was recognised early on in life :)

    This advise is spot on!
     
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  21. lucasisking

    lucasisking
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    @liamt My son (12) has Aspergers (non-statement) that was diagnosed around the age of 5, as his speech and language seemed to be developing noticeably slowly. Aspergers is also low-end of the spectrum so he is capable of empathy, and is actually the kindest and most gentle human being I've ever known. He seems oblivious to the concept of cruelty and hates the idea of bad things happening to people. He's not a fan of bad language either!

    I wouldn't change a single thing about him.

    That's a little selfish on my part I grant you, as for him it might be 'better' to enjoy a 'normal' life. But he is very happy despite some social interaction problems and struggling to cope with big changes (ie starting high school). He has some strange ways and foibles; and an obsessive sense of routine and sticking rigidly to his favourite things (especially diet); but he is generally very happy, intelligent and doing great at school.

    So don't be too disheartened is what I'm saying. You'll find some of his differences to be impediments, but you'll also grow to absolutely love the aspects of him that make him different special.

    Advice? make sure he goes to schools where there is good support for autistic children and where teachers are aware of how autistic minds work. Be extra vigilant against school bullies and makes sure anything like that is stamped on immediately. Seek support from your GP to ensure he gets all the support available (eg SEN workers) if & when required, but really try to just get on with life as normal. In most aspects, he will BE normal. Be patient and encouraging, and try not to worry!
     
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  22. liamt

    liamt
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    cheers man. yeah, he is very rigid about food. when it was baby food he would eat anything and was a right chubbster! then went on to big food and he is very picky. almost always has the same tea!

    he is a happy little fella so thats the main thing :)

    cheers for that man :) really appreciate it!
     
  23. nheather

    nheather
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    I scored 42.

    Cheers,

    Nigel
     
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  24. IronGiant

    IronGiant
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    14, a very interesting test. Be interesting to know how I would have fared if someone had been monitoring whether I was being over-analytical or not.
     
  25. shodan

    shodan
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    My missus has always felt that my 8 year old might be autistic. I've never agreed and she put that down to me not wanting to admit it.
    Ignoring my experience in years of teaching performing arts to kids with special needs and 12 years as a police officer..
    I've always accepted that he had trouble socialising and prefers one on one and he doesn't seem too sensitive to other people's emotions, but then I'm the same.
    So I did the test for / with him. Came out at 30. Then the next day we did it and it came out at 27 then the next day it came out at 31.....
     
  26. liamt

    liamt
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    cheers guys! :)
     
  27. lucasisking

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    Today my son is going to be representing his high school during an opening evening for parents of prospective new pupils. He'll be showing parents and kids round the school, and is hugely looking forward to the responsibility.

    A year ago, he was in tears most mornings just going to high school. Just shows what can be achieved with the right care and encouragement, and the right school.

    If I were any prouder I might explode :).
     
  28. liamt

    liamt
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    sweet. well happy for you both. whatever happens he will always be my special little lad. not planning on having any more now so he will always have our full focus.
     
  29. Runaway

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    I have 2 sons from a previous marriage. Looking back on it, it seems obvious now that my ex-wife is on the scale but she never told me, nor (I expect) would admit it today had I the cheek to ask her straight out. She was impossible to engage in any disagreement and upon asking her sister how they coped with her I was told that it was usually better to say little but leave her a written note instead. I just thought she had difficulties with confrontation. What did I know about autism/aspergers? Anyway, I noticed at about 3 or 4 years old that our second child would get frustrated if - when taking a promenade - we wanted to return by another route. I think that was the first sign, for me, that all was not completely right.
     
  30. toothless38

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    I was just reading your post as I am new to this forum and I currently have a similar situation with my son regarding school. He is 10 years old and in his final year at junior school which is very important. We have had tears and full meltdowns every morning since the start of term but only managed to get him to school a handful of days so far. He was diagnosed with autism at the age of 4 and we have had various ups and downs along the way with various things. He is a lovely polite lad and he has had his mother and my separation to deal with unfortunately over the last few years. I honestly don't know where to turn on the school issue, not sure whether to be more strict on getting him to school or follow his mums lead in being patient.

    We recently viewed a secondary school and was impressed with how the older pupils were mature in representing the school showing us around and would love for this to be my son in the future.
     

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