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jlo9371

Can anyone help me on this!

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I hope this doesn't bore you too much, but I am so scared & confused.

 

My 12 year old son has always been hard work & different, but during another school visit regarding his behaviour, his teacher mentioned Hyperlexia (as she had been informed of his ability to read by pre-school). She felt that I should do some research into it.

 

I cried for days, because as I researched it and went on to read about AS as well, I finally realised that for the first time ever - I knew my son, it finally clicked! why he behaved the way he did.............he's about to get assessed, but nobody is in any doubt that he has high functioning aspergers, and hopefully we will be able to ensure he gets the right help and support.

 

What has totally freaked me out, is that whilst reading Tony Attwoods books, and LOVING MR SPOCK, I had this realisation that this also sounded very much like my father!!..........but even more unsettling, it sounds like me too.

 

Have I just gone into this too deep, or is this possible?, It's not just vague similarities but even the questionaires etc, confirmed it, my speech impediment as a child, precocious reading, behavior difficulties, etc,etc (I am a female).

And I even got that stupid doll question wrong, it took a 10 year old to explain Doll's dont think!!

I am really confused, and would be grateful for some advice.

 

Thank you.

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Dear jlo9371

 

First, a huge welcome. You'll find alot of friends here.

 

I know it all seems terribly scarey at the moment but give yourself time - remember that you are the same person you were yesterday and your son is the same child you gave birth to and have loved all these years.

 

Your story is not uncommon. My son has Asperger's which made me realise that my Dad had Asperger's and so did other members of my family. The consultant said I had a very strong empathy with my son - which I guess is his way of telling me I'm there as well.

 

You'll find a load of support, help, advice, fun, laughter and tears on this site, so ask away.

 

Barefoot

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Hi

 

Welconme!

 

I think it is not all that uncommon for families to start seeing traits in other family members. After H was diagnosed my Mum read Tony Attwood book and is now convinced my grandfather has As - it explains a lot. The community paed who knows us personally asked if I thought my husband might be on the spectrum! On deeper thought he probably is it would explain alot! too! I myself see alot of me in H, I think a combination of genes from each side of the family produced H who is unique but most obviously AS.

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Hi jlo

 

Welcome to the group, don't be scared you will find plenty to read in here, and lot of support, there are some study suggesting that ASD is hereditary but may come out because of some other triger or just it may be because the "naughty childtren of yesterday"are now diagnosed properly the main thing is to get support and understanding. Let imagine you were on a journey for Spain and you have been redirected to an other location and you have to find out where it is and all about the culture and learn some basic language, difficult and worring but not impossible. :rolleyes:

 

Have a deep breath it a very interesting journey with so much to learn one thing is sure you will never get bored!!! :wacko:

Here 2 links you can have a look at the first is about sensory motor integration the second is about education for aperger children.

 

http://www.autism.org/si.html

http://www.cesa7.k12.wi.us/sped/autism/asper/asper11.html

 

I hope you will find help and support all the best.

 

Take care.

 

Malika.

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Hi jlo

 

The more I've read the more I see people in the family, elements of myself and husband. We all have traits. So far the difficult thing is not blurting out to people who know nothing of what we are doing my opinions about our mutual relatives. If ever we get a dx for my son who is 4 next week, then I wonder if in reading about the condition some pennies will drop in others.

 

Another thing I have noticed is that the more I read on here and in books and as time goes on I see more 'behaviours' in my son. I struggle with working out whether I am thinking about this stuff too much, whether they have always been there unnoticed and whether he is getting more AS/ASD like as he gets older.

 

I can understand where you are coming from. This site is amaxing with people who know much more than I do but everyone here is great. I've learnt alot and it helps deal with stuff that is going on that no one else in the world understands.

 

Welcome....

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Thank you all so much,

 

I have always been called mad (I think in an eccentric way) but I really thought I was losing it., I always knew I was different and never seemed to "fit in".

 

But hope I am not trying to fit ourselves into this, I know that I go on these mad missions, to understand things, and I am scared that I am losing sense of what is real, and have I made up the rest - to fit the category.

 

This probably doesn't make much sense.

 

But at least I can now have a day where me and my son, actually smile at each other, at least some good can come out of this, and if he can be spared the confusion I have endured through my life, then thats a good thing.

 

Thanks for your kindness

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Hi Jilo,

 

Welcome >:D<<'>

 

My son who is very nearly seven, was dx ASD age four.

When he was a toddler he was very interested in reading car number plates, would love to watch the 'countdown' programme and would run up to the telly saying the letters before Carol Vorderman read them :rolleyes: .

He was obsessed with shop names and logos, I thought he was just recognising them by the shops we passed, so I used to write them out on an etcha sketch, he could still recognise and read them however they were written.

 

When he was at school (have taken him out), the teacher said that they would have to take him out of guided reading, (where about six kids all read the same book) because he had read the whole book aloud before the other kids had even read the first page.

He never ceases to amaze me what words he can read :o .

 

He was tested by the Ed pysch, he scored on the 93rd centile for reading accuracy and on the 48th centile for comprehension, I actually believe it would have been higher if it was not for the fact he became very anxious with the Ed pysch pressuring him.

 

I just happened to be searching through autism related info on the net, when I came across the hyperlexia site, when I read on further I was astounded, they could have been talking about my son with the things it said, especially when it said that it could co-exist with ASD.

 

I have managed to get myself a couple of very good books on hyperlexia, but unfortunately does not seem to be that recognised over here.

The reasons I was very interested in it was, because it says that they have a different learning style, so obviously with me teaching him at home I wanted to find out all that I could.

 

I dont think the Ed pysch knew too much about hyperlexia and said something about his reading ability being an isolated kinda savant skill :rolleyes:

I am still not convinced of this and I dont think his speech and language therapist is either, as she has mentioned it since.

 

But to be honest I dont know who to approach about it, also wonder if it's worth approaching people that have less knowledge than even me.

 

My son has a very uneven profile, his numeracy ability is very poor, but his literacy is improving everyday, we work very hard on comprehension tasks and I'm sure this has helped.

 

My son has great difficulties with language comprehension, although he is very verbal and, initially appears alot more able than he truly is, he is over two years behind in his understanding of receptive language.

 

I appear to have gone on a bit :oops: sorry :wub: .

 

Anyway, once again, Welcome.

 

Brook

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Hi,

 

You aren't alone in this! Only last week on the radio, Simon Baron Cohen, an expert in ASD research was talking about the increased likelihood in autistic traits among parents and grandparents of someone with ASD.

 

I have a 16 year old dx with AS last year, and since then I have noticed aspects of this in my father, father in law and myself.

 

You have a lot to take in at the moment, take your time and browse the forum, you will find many of the answers you are looking for and if you can't - please ask.

 

I really hope that your son will get the support he needs.

 

K

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both Nemo and I were early readers and don't remember learning.

My mum discovered I could read one day in the car going down the motorway, I was not yet three.

I asked what 'polypropylene' was and she automatically corrected my pronounciation before she realised I'd just read it off a lorry :lol:

 

Com is definitely hyperlexic - he wasn't interested in reading one day and then he could read the next, happened about the age of 5. His comprehension is close to the same level though so the 'professionals' say it can't be hyperlexia

 

Zemanski

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Thanks everyone, its been wonderful not to feel alienated or mad!

 

@ the lady with hyperlexia son.

 

I just want to say that I have had this feeling from a baby that his development ws not quite normal, his inability to play with toys etc. But its the exceptional language and reading skills that send you off the track.

 

Funny thing, his worst teacher who gave him an absolute dogs life, was the head of "special needs". So what does that tell you. I feel bad as I should have followed my instincts.

 

The Psyc Ed did say however, that MOST ASP dont get evaluated till 16yrs, so my son is supposed to be lucky!

 

I dont know what to do from here

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Hi,

have been reading this topic and realised my NT daughter is possibly hyperlexic, she began reading words at around 2 ( I remember her asking me what 'conditioner' was in the bath one day, the pronunciation wasn't right but I knew what she meant ) She talked fully at 18 months and could do a 100 piece jigsaw (lost this skill later) But now, 12, her reading and comprehension are way above her actual age, but her spelling is appalling.

My eldest son is just like Com, one day he couldn't do flashcards, the next he could read ! Again, his reading age matches his comprehension. His school don't think he has any difficulties (one day last week he missed lunch and didn't think to tell anyone )

Hyperlexia isn't necessarily a gift, I think it has made my kids' teachers assume that everything's ok at school, and that they're bright kids, full stop.

 

wac

Edited by waccoe

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I just want to say that I have had this feeling from a baby that his development ws not quite normal, his inability to play with toys etc. But its the exceptional language and reading skills that send you off the track.

So true for us too! There were concerns about my daughter's development too, she was late to do everything. Then one day, she learnt to read and bowled everyone over with her reading skills. No one thought that a child this intelligent could have any problems and thereafter her lack of social skills and physical clumsiness were seen as the quirks of a little genius.

 

I didn't worry as she seemed very like me at an earlier age, I have a vivid memory of the kids at nursery grabbing a newspaper and making me read a paragraph or two as a "party trick". :wacko:

 

I am confused as to when precocious reading skills become "hyperlexia". I never had any problems with understanding of non literal language, whereas my daughter clearly did. She hid this for years though. She'd read all of Jane Austen by the age of 13 and many other classics. There were always puzzling gaps in her understanding of underlying meanings which didn't seem to fit with her reading level - one of the many subtle signs which pointed us in the direction of ASD. (Eventually - she was 15 at the time of dx)

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Just wanted to add, my sons speech did not really develop until he turned four.

He could say words, but only us could understand them, others would always ask us for clarification. He now does not stop talking but, it is very one-sided and can talk endlessly about his obsessions ie.. Starwars & videogames, regardless of whether anyone is interested or not, this often leaves him stressed when trying to relate to kids his own age.

 

And yes, I think people find it hard to understand that this verbal child who can read very well, has probs with communication, sensory issues, social interaction etc...

He also talks very loud and sometimes sounds quite well spoken, although not all the time. :blink:

 

Brook

Edited by Brook

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One thing that now makes total sense, were the comments in his reading record book aged 5.

 

J read wonderfuly today, however, has difficulty recalling the story. Can you please encourage him at home.

 

Upon reflection, he just decoded words, without understanding what they meant, but this also helps them appear to have more social skills than they truly have.

 

The other day, I asked him why he kicked some food at another child, he said he was angry, but said that he "said sorry". I asked if he knew what "sorry" meant.

 

His indignant reply was "of course! I have read about it in a book". unless I had asked, I would have thought he "had felt remorse". He later hit his 5 year old brother, I asked "why he did it?" he replied "he was crying anyway!" . Previously, this type of remark I often get, would have tried my patience and resulted in a scene.

 

Now I realise that he hasn't intentionally spent the last 12years trying to drive me mad.

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Guest flutter

my daugher can read, put "emotion" into it, but has not got the foggiest idea of what she was reading !!!

I read kinda nuttly, so i think she can read cos the way i do it,

 

as for the sen teacher, well.... they think they knows and in reality they dont!!

sorry if i have offended any who are here and are

Cx

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welcome jlo

u will find the best most knowledgable ppl on this site they are a fantastic bunch and will carry u over the coming weeks and months when things are hard i like to think of them as the jesus like ppl in the footprints thingy (yeah bet that made no sense lol)u know the one when u saw only one set of footprints it was then i carried u all the so called experts cannot although they do try to know how u feel but we can and this is a rare thing u take care and if u need advice or help or a good winge or god forbid a laff come on here

take care sharon

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Jlo

Dont be scared I have only perhaps in the last month realised I have as. .I think my father has it too.But we are still the us, still the same people we were before we realised.My thoughts are with you

Edited by ceecee

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It's always a roller-coaster of emotions at this time >:D<<'>

 

My father has AS, and I have very many AS qualities. My 16 year old has AS, ADHD and Dyspraxia. My 4 year old is in the middle of assessments.

 

You are not alone, and as others have said, you are all still the same people you were before.

 

Be gentle with yourself, and take one thing at a time >:D<<'>

 

Bid >:D<<'>

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I feel overwhelmed by all your replies. You see, this is the world of my dreams.

A place where people respect, encourage and comfort others in need.

 

You truly have made me welcome.

 

I read that instinct and "gut feelings" are more pronounced with AS, so what I will say that for anyone coming to this forum & expressing concerns over their children, then like me you already know the answer.

 

My biggest regret is that I allowed "proffesionals" to cloud my judgement. Although he was my first child, I KNEW he was different. If you have any doubts or concerns that come from inside, then you must follow it through.

 

I doubt whether any of you are wrong, and you will eventually get your concerns validated.

 

This may actually be the start of my life.

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Bit of an update (dont know if I should have started a new thread)

 

Today in school he tried to stab another child with a pencil, and annoyed another child to such an extent that the child went to attack my son.

 

In addition to taking his normal clothes to school and changing out of his uniform at the end of the day, to walk home (no idea why or explanation)

 

As I am now much calmer with him etc, and don't "fly off the handle!", I get the feeling I am being taken advantage of (but maybe wrong)

 

Do children with ASD's manipulate situations?, as all the info states otherwise.

 

Any help would be appreciated.

 

Thanks

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Hi jlo ;)

 

I had a similar incident with my son when he was 4 (he is 8 now) he stabbed his sister with a pencil on the chest (she still has the mark ) H use to be very angry and frustrated and would lash out stabbing punching kicking or bitting now he is much calmer after so many disaprouval and discussion he seems that he has taken on board that violence is not the way however he still kick his bedroom door or slam it. :wacko:

The last few incidents were when he punched his sister 6 weeks ago and he bit me on the arm (I had a bruise for 2 weeks) It seems that afterward he had some thought and was very remorsful now he is much more in control B) even if I cannot say if it will last. H now has learn to lie even if very badly and it seems that it is a good development for ASD kids. From my experience ASD kids do not manipulate as such but because they don't understand our questions or are not able to express an answer we are left wondering what is all this about.

One important point is that our ASD children have a very bad memory concerning personal events if you add this to social misunderstanding and expression difficulties it is a job to find out about what happen at school for ex.. :(

Another important point is that they are unable to express themself when they are tired, angry or just after something happen, :hypno: you may have to leave it for some times then come back to it with simple questions, kind of A) B) C) answer or Yes or No option this what I am doing with H, then when he start to explain by himself I have to make a selection about what is important what is not, not easy but eventualy you will get use to it and your child when he is understood become far less frustrated and much calmer :thumbs: , the next task is to try to teach him what is acceptable :shame: what is not, and make him accept that his perception is not always right (find this to be the most challenging) I try to use social stories for this or make him watch other people outside sometimes it works using absurd situation :fight: .

Your chil has probably a very good reason why he wants to change before going home it may be some misunderstanding with instruction at school or some kind of worries to be seen by somebody outside in his uniform try to find out it may be something irrelevant which has taken uge importance for him :crying: .

Another point is that ASD kids because they do not understand the world around them tend to want to control everything it is very difficult to make them understand that they cannot always do what they want, trying to make them emphasize about others situation and difficulties may help (another difficult one :wacko: )

Hope you will find out what is going on..

 

Best wishes ;)

Malika.

 

:robbie::robbie::robbie:

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Thank you MALIKA

 

After learning about ASD's and the relevance to life etc, I did my best to understand my son. But when he p*****d off his sister, he would normally be sent to bed etc, however when I restrained myself and INFORMED him (instead of screaming) that it was unacceptable, he just gave me this weird smirk..............................that implied that he could not care as he wouldn't be punished (he used to look scared/ish).

 

I started thinking that this was all messed up and J didn't have any ASD's,just a manipulative, spoilt kid taking his mom for a ride.

 

 

Suddenly he pointed to a comprehension question - using his middle finger!! I read this was highly typical of ASD's. (and it was scary) I have noticed him do it before, and not taken much notice (he also has LOADS of other behavior's that are alike other traits/characteristics on the AS.

 

I appear to be receiving conflicting signals. My son shows indifference/or does not care., appears to act with pre-meditation, and implicates anyone else except himself for the situations he gets in.

 

Surely its possible for a child to overhear a converstion! read about it, then act the personality out (in order to gain attention etc)

 

Or am I a barking mad! and that kids who are ASD's do not have manipulative tendancies.

 

Yes, he is totally unable to remember or recall specifics...................the most I can get out of him his ......................"Fine". The answer to all questions!

 

I have, I promise, tried my best to understand this! and most occasions I am able to relate. But I became aware that after a behavior, he was observing me at a distance for my reaction, or the lack of!!

 

This has to be the most confusing development issues ever............................................PLEASE ADVISE/HELP

 

(I am really disturbed/confused/upset at the mo), I have no idea what to do next?, explanations mean nothing to a person who you finally ascertain " is unable to tell you about "what they had for lunch". (I am not the kind of mom that looks for attempts/excuses to justify any of my childrens behavior), but this is beyond comprehension!!

 

Very confused ;)

Edited by jlo9371

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Hi jlo ;)

 

I think of you I have been today to an autism parent group and learn more about social stories...

PLease have patience I will try to answer to you at lengh as soon as I can at the latest Saturday but if I don't fall asleep :hypno: (I had a very busy day) I will try this evening.

If you could tell me a bit more I don't get the full picture quite yet???

 

I am wondering however if your child does'nt have as well Tourette syndrome if you get the chance have some search on the internet.

If you wishe you can send me a personal e-mail :

 

ukmalika@hotmail.com

 

In the mean time try not to worry to much I am sure there are some improvements ahead, do take care. :wub:;)

 

Malika.

 

Ps I am just trrying to guess I have read a lot but I am not a professional however I could eventualy ask some advice.

 

:robbie::robbie::robbie:

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J was assessed with a reading age of 16+ at age 8 years and six months - but his comprehension was only (!) assessed as 11years.

 

I struggled with this for quite a while as I couldn't understand how he could read something but not comprehend it ... until I read Understanding and Working with the Spectrum of Autism: An Insider's View by Wendy Lawson. In it she wrote about children with autism being taught to 'read for meaning' - she said that unless she was told that she had to answer questions on a book or passage she just read the words because they were there. It helped me to understand a little bit better ...

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Hi jlo ;)

 

I hope you are all right. :)

 

There is a very good book from Tony Attwood "Asperger's syndrome, a guide for parents and professionals" not only it gives an excellent understanding of the condition but as well explain many mistakes made by adults working with AS kids

In the chapter "cognition" there is a paragraphe --->Reading Spelling and Number Skills where T Atwood explain that some AS children develop hyperlaxia. :dance:

 

At the end of the same book in the chapter "Frequently asked questions" answering the question 8) Can Asperger Syndrome occur with Attention Deficit Disorder? T Atwood explain that both condition can be found in the same child and he explain how to differenciate between both conditions it is very interesting and probably relevant to your case may be you could get the book from your library or by any mean send me a PM and I can send you photocopies of relevant chapter. :)

In Another very interesting part there are comments about abilities and intelligence tests with strenght and weakness of AS children.

There are as well advice and information to help with agressif behaviour. A lot to do with frustration and social misunderstanding and to much to cope with, however when our kids are not classified as having learning disability they are not untitle to get much help and funding. :(

 

Now I would like to share what I have learned in the autism group I go to, it was all about social stories and how to write them with some history about Carol Gray

first Social stories. Apparently Carol Gray started writting socials stories because of a young lad who was constantly disturbing assemblee and meeting by asking questions and arguing with the speaker :angry: , no threat no punishment or dialogue had ever manage to make him stop :wallbash: and on one occasion whem C Gray was present at a big meeting with some officials it's all happened again, Carol Gray then had a chat with the young lad trying to find out what was his motivation and eventually found out that the boy was absolutly convince that any speaker talking to a group was in fact talking to him personaly and his duty was to answer as he did not want to be rude :wacko: . Carol Gray then started to write her first Social Story to explain the social understanding of group conferences speakers and what was the correct way to acte in such circontances, after that the boy never disrupted another meeting.

I personaly found this to be of enormous importance as many time we miss the point with our children because we cannot understand the way they see the world. In fact their perception of the world is so different but so logical that if we miss one point we can get it completly wrong. :oops:

 

Sorry if I have been on for so long. :oops::hypno:

 

Hope you will get help, take care.

 

Malika.

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Hi jlo

Sorry forgot to tell you that the specialist who talk to us told us exactly this that most of AS kids would learn to say Yes..Yes ... Fine ....Fine... when we lecture them even if they don't really understand why we are making so much fuss, just in the hope to be left alone and not to have to hear "too many words" (as my son put it) for something which is probably irrelevant to them. :shame::hypno:

Does this fit the bill???

Take care.

 

Malika.

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OMG............

 

Malika! >:D<<'> :thumbs:

 

You hit the nail on the head!! B)B)B)

 

Sorry it's taken so long to come back to you all but have soooooooooo much news

 

Meeting with psych ed.............did nit need to see J (my son)

believes it's HF ASPERGERS + HYPERLEXIA!

 

Special needs co-ord @ school, arranging an IPE (I think) & a staff training day for teaching ASD's.

 

Say I don't need to get a true DIAGNOSIS YET!! :wallbash::wallbash:

 

But they are taking it seriously. :wacko::wacko:

 

They also did a LEARNING STYLE questionaire which gave great insight & confirmed loads. :pray:

 

Is this heading in the right direction?..............I have no idea of my rights!! & they placeed him as ACTION PLUS on the register (no idea)

 

Confused mom (again)

XXXXX :wallbash::wallbash::wallbash:

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HI jlo , ;)

 

Glad to see you back I was a bit worried that things had become too much for you at the moment. :hypno:

It is the right thing to do to put your son on school action plus and giving training to the staff, but by any mean you have to try to get a DX the Dx is not the school problem and they have no right to tell you that your son don't need one. :wacko:

 

As far as I know it is essential for your son future and for all the request for eventual DLA , SEN decision or statutory assesment and statement

The person to approach for this is your GP possibly with a letter from the school explaining your son difficulties and their concern :unsure:

May be what the school ment was that they would not do a statutory assessment yet before trying strategy with school action plus. Which is what they usualy do.

 

May be I have misunderstood but I think what you need first is an assessment by a neurodevelopmental team who have some specialist in AS most of them have, talk to your GP and (if you have a letter from the shool it will help) your GP will make a referal for a medical assesment.

Seems a bit frightening :tearful: but it is the starting point to understand and help your son. The only thing is that getting a referal may take some times...

 

Try not to worry too much I am sure you will get lot of support from the group. :wub::)

 

Take care. :rolleyes:

 

Malika.

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if you get the right support and help for your son through school action plus then it it not strictly necessary to do all the other stuff. This is sometimes possible and can sometimes work.

 

but

 

it is rare to get enough of the right sort of support for an ASD kid without a formal diagnosis and a statement of special educational needs.

 

remember too that even if you get the right support now this may not continue if say you change schools or move area - many people find that while primary school provision was good, high school provision just wasn't there when their child transferred (or was at a much lower level).

 

diagnosis this gives a clear picture of the root of your child's needs and makes it clear to everyone working with him the type of needs he is likely to have (each ASD person presents differently with different strengths and needs but it gives a good pointer).

 

The process is quite easy to start - you tell the GP what the ed psych has said and ask for a referal to child and adolescent mental health services (CAHMS) to see someone specialising in Aspergers/ASDs (or to a diagnostic team specialising in ASDs)

it takes quite a long time - months - to see someone and then often you have to see them (or various other specialists) several times before they are ready to give diagnosis. but as you have the Ed psych's views to take with you it may be quicker.

it would have been nice to have been able to go through this process before it was absolutely essential for Com - we had to get the diagnosis to get assessment for him and he was in crisis with a tribunal coming up and the report wasn't ready and the LEA refused to accept it as late evidence ......aaaaargh! :wallbash:

- my suggestion is to get the process started sooner rather than later when you are even more stressed.

 

diagnosis can also give you access to other things like DLA and carers allowance which can be really helpful if you find you (or someone else who cares for your son) can't work because he needs you so much more than other children would.

 

A statement gives your child legal rights to particular and specific support which school action plus does not give - the school must provide the provision in a statement by law but they can choose to give whatever level they see fit under SA+ which is why kids often lose it all when they transfer schools.

 

you can talk to the senco about applying for a statement - most are pretty reluctant for various reasons - not least that they actually have no choice but to provide the provision however much thier budgets fluctuate.

If you feel that he needs a statement though, you have the right to ask the LEA to do a statutory assessment for a statement of SEN - you can do this yourself, again it's pretty easy to get started.

 

unfortunately, LEAs are very reluctant to assess or give statements at the moment and you may have quite a fight but you have the right to appeal to tribunal if they don't cooperate - there are several organisations to help with this if you need support and quite a few of us here have practical knowledge and personal experience if you need us

 

take care

 

>:D<<'>

 

Zemanski

Edited by Zemanski

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Thanks all especially Malika & Zemanski >:D<<'> >:D<<'>

 

But let me explain a bit more....................(if you dont fall asleep)

 

The Doctor wont refer without letter from Ed Psyc, and the Ed Psyc doesnt feel a formal evaluation is needed yet, wants to see how the IPE works out :wacko:

 

When I mentioned a Statement of Special Needs, I was looked at as barmy! and received a comment of "oh no, you dont want him statemented" :wacko::wacko:

Implying, its some kind of stigma!!

 

Also a special needs & education charity - SNAP also said not to be concerned about a formal diagnosis, and the fact he is on the special needs register is adequate.

 

Although everyone agrees that he has ASD/S

 

I was considering changing his GP, and paying for a private consultation with a reknowned NHS consultant, but was informed that I could spend my cash on better things.

 

With my limited knowledge its hard to argue against anything I am told.

 

And yes I have been so stressed out, I have been so anxious & depressed (kind of shellshocked), this last week has been bad, I dont recall ever feeling this stressed, overwhelmed, inadequate & pathetic.I am shouting at everyone, freaking over the silliest things.

 

I feel so pathetic when there are parents who have children with much more serious problems than mine, I just dont cope well with too many demands in my life.

 

Sorry again for my constant questions, and gibberish.........just that I really am struggling with this.

 

Thanks

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Hi Jlo, ;)

 

Please do not feel pathetic, problems cannot be judge by big or small they are problems and need to be solve, your son is in difficulties and need help that's what matter. :)

I do not think that the EP has any right to say :shame: that you do not need a formal evaluation this is not for her to decide. As for your GP well I remember when I went to my GP for my son and told him "there are some concern that my son may have some form of autism and needs a referal" his answer was "who says that" then I handed him the letter from the school signed from the SENCO. without anymore comment after he had read it he just said "I see well I will do a referal" I was then quite happy :thumbs: that I had the idea to get a letter from the school.

 

Now you may be able to get a letter from the SENCO or any kind of proof that your son has been put on school action plus, with this you should try again with your GP or may be if your GP is part of a practice ask to speak to the practice manager :ninja: it is usualy a strong incentive except if you GP is the manager. :wallbash:

If this does'nt work change surgery take a bigger one if possible as you will have more choice for a gp then do not say :oops: that the EP is not in favour of a formal assessment, just bring some proof that your son is in school action plus, with possibly an IEP and ask for a referal. If you have the same refusal you should seriously consider to complain to the NHS. :angry::angry:

If you can afford you could get around the situation by requesting a private assessment just make sure they are recognised most of the time any hospital has some access to private care but you may need to pass through a GP as well I do not know where you live but for sure in London you have GREAT ORMOND STREET hospital which has some access to private care and has a very specialised team for all form of Autism. B)

I think the quicker you get a referal the better do not worry about the stigma the problem with the LEA is that they do not want you to ask and get a statement and as they know well the first step in that direction is usualy a formal DX beside if your son is not fomaly DX you may always be in doubt that you got it wrong... :oops:

 

It is a very difficult time for you now as you just realised that your son has a medical condition and it is a shock :crying: for everybody I am not too sure what advice I can give you, as for myself I had drowned myself in books about Asperger and Autism and learn as much as I could about it and about all the educational procedure and organisation, it was my way to cope but everybody is different. however remember the more you learn the more you can fight for your son. :ninja:

By any mean do not feel inadequate :(:) you have done so much already things will improved B) and thanks to you.

 

Take care hope you wont fall asleep along this post. :oops::hypno:

 

Malika.

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For more help may be you should consider contacting MENCAP, NAS (the national autistic society in fact could assess your son but I am not to sure what is their procedure) and for legal advice the IPSEA bear in mind that it is sometimes difficult to get hold of somebody there but leave a message they usualy come back to you.

 

Take care. ;)

 

Malika.

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When I was 4 years old I asked my parents if they had a book on electrical things. They didn't but the nearest thing was a Haynes manual for a car. They were really technical back then and actually detailed how things worked unlike the Haynes manuals of today. It was absolutely fascinating and had a chapter on electrical stuff and others on things like the engine, gearbox, suspension, and fuel system. I could read entire sections although I didn't quite correctly pronounce some of the longer technical words. I took the book to school but my teacher wasn't impressed when I wanted to read it instead of story books with short simple sentences written in half inch high letters such as The cat sat on the mat. The teacher was even less amused when all I wanted to talk about during circle time was how carburettors worked and the optimum fuel air ratio. My end of term report stated that I choose unsuitable reading material in lessons.

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