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Can anyone advise me on the implications of being on the autistic spectrum

20 replies

MrsPuddleduck · 12/03/2009 21:02

Bascially we have just got back from parents evening. DS1 (5) is displaying behaviour which could indicate he is on the autistic spectrum and they have asked our permission to get the educational psychologist in to assess him fully in case he needs extra help at school.

I am completely flawed and emotional about the whole thing as I wasn't expecting this.

From what I understand it is because

  1. He can be obsessive about certain activities and get upset if they try to move him onto something else. He is also really attached to one particular friend and they have now stopped trying to split them up as it is not worth the upset it causes my DS
  2. He doesn't seem to be able to link people and their feelings. For example if someone wins an award at school he will ask "why does that make them happy". He does this alot.
  3. He repeatedly asks questions which he knows the answer to for example "why am I excited because its Christmas"

There must be other things as well.

Is there anything I should be doing?

What is going to happen to him?

OP posts:
RaggedRobin · 12/03/2009 21:48

i'm not an expert on this, but just wanted to say that whether or not it is decided that your ds does need extra help at school, he is still the same lovely little boy that you've always had.

it may be it is only being picked up now because there are more opportunties at school for stressful or confusing situations to arise.

if you are looking for strategies for dealing with his difficulties, we have found
these now next later boards good for transitioning between activities. often a visual prompt can help with structuring the day's activities. perhaps school could try a visual timetable.

this link to social stories was posted before by someone else and has lots of examples of how social stories can be used to help your ds with issues like emotions. he may need to be taught explicitly about emotions as they may not be easy for him to understand.

it is a good sign that the school have been proactive about this. hopefully it means that if your ds needs help, they will put the appropriate support in place for him with your agreement. hope this helps.

4nomore · 12/03/2009 22:09

Gosh that must've come as a shock - not what I'd expect to hear at a parent evening! Of course you have to adjust to the idea and it may turn out that although your child displays certain ASD behaviours they don't merit a diagnosis but I'd echo that it's good that the school is so on the ball. My son had a diagnosis just before he started nursery school but the autism team didn't actually make contact with him until last week. The school were struggling with him a bit (he's not a difficult child but school was a whole new situation for him etc) but following the assessment visit from the advisory teacher, just putting in place a few suggestions that he made on the day has made everything so much better for my son and for the staff - they've not even got as far as timetables yet! The right interventions just help your child achieve their potential so although you must be all stirred up right now it sounds as though you have a very good school that really considers the welfare of its pupils. Hope it all goes well for you.

Shells · 12/03/2009 22:09

Poor you Willmouse. It must be very stressful hearing this. I would think it unlikely that he is on the spectrum if it hasn't been picked up before now, although maybe at the high functioning end. There are lots of tests you can do (I'm sure someone will provide a link) to see if he meets all the criteria. One of them is for speech problems (which my DS has in spades) but sounds like your DS doesn't.

Try not to worry too much. The best thing to come out of it is that he may get extra help if he needs it.

amber32002 · 13/03/2009 06:37

Hi Willmouse, goodness me, not something anyone expects at a parent's evening!! There you are, expecting a bit of conversation about numbers, drawings, writing...and they come out with that!

I'm an adult on the autistic spectrum (Asperger syndrome), as are several others of the lovely mums on here, which might give you a clue that it's rarely a disaster these days with the right help, support and patience for/with a child (and help and support for their parents too).

Does he have it? That's the big question. They're doing the right thing by asking their Ed Psych, but you might want to then ask your GP to refer you to a developmental paediatrician, as those are the people who actually do a proper diagnosis or discounting of this theory, rather than a "what might the school need" sort of thing.

From what you write, I can see why the school may have thought "aha!" (though I still think they could have chosen a more suitable moment...). Many children with an ASD are not really badly behaved, but are over-precise, 'little professors', socially awkward, very neat or obsessive about routines or hygiene or having things a certain way. Maybe not very good at sport or fine motor skills. They maybe don't like unexpected change, or can't understand emotions or body language or face expressions unless someone explains it in words. They're just as likely to be quiet and reserved, preferring to withdraw rather than create a fuss, not happy in big noisy parties or unexpected events.

Often our senses are hypersensitive or work differently to yours, so we find noises immensely loud, lights immensely bright, odours immensely overwhelming, the texture of clothes unbearably scratchy or tight, etc. Or can seem entirely deaf if people speak to us, because our brains usually can't concentrate on speech if we're looking at something, so you have to get our attention first.

But it's the ones with behaviour problems or almost total lack of speech or very low IQ that the public remembers (about 1 in 7 of us, I read this week), which is why autism has had a 'bad reputation' with a lot of the public . Instead of helping and understanding and respecting us no matter where we are on the Spectrum, too often people just fear us because of this misunderstanding about what we can be like and why. I think this is why it's such a shock for parents, because they imagine that every child will be a nightmare of behaviour all through their life and always unable to look after themselves, rather than be like some of us parents on here. Some individuals are low-functioning or very badly affected, of course, which is why I try to help get much better help for the parents and the children concerned.

As Shells says, the best thing is that he may get some extra help to try to understand the world, and you'll understand him better too. And if it's not an ASD and this is just him being him, the outcome will be that you've learned a bit about the 1 in 100 of us who are on the Spectrum, which is always interesting .

Keep asking...loads of good people here to help.

Lancelottie · 13/03/2009 09:21

Amber -- please will you write a book?

L (probably AS, with AS child)

MrsPuddleduck · 13/03/2009 09:46

Thank you so much for your replies, particularly Amber it is good to hear how you feel.

I am feeling better about things this morning although I can't stop myself going over things in my head.

He is not badly behaved - just difficult and quite stubborn.
He is fine socially - he has one particular friend who he has latched onto a bit unhealthily but he does talk about and play with other children at school
His speech is good - in fact he has a large vocabulary and last night the teacher commented that he has a really good memory for the high frequency words they are teaching at the moment. In fact he has a brilliant memory full stop. He remembers the most ridiculous things!

Shells - what do you mean by being at the high functioning end?

RaggedRobin - thanks for the links - I have had a read.

4nomore - it was a huge shock. The teacher was literally speeding through his numeracy and literacy targets and I was thinking she was in a rush to get home, but no.

I have decided to wait to see what the educational psychologist says and then I think I will need to get some sort of second opinion for my own peace of mind. I hadn't thought to go to my GP - I didn't know whether or not to pay for him to have some sort of private assessment.

I really appreciate the replies. I don't understand autism (yet) and feel a bit ignorant but I will find out all about it. I was surprised that 1 in 100 people had it, in fact the teacher said last night that lots of people go their whole life undiagnosed. Personally I would rather know so that we can give him any help he needs.

OP posts:
drlove8 · 13/03/2009 09:54

AMBER SHOULD DEFO WRITE A BOOK!

amber32002 · 13/03/2009 10:13

Amber is writing a book, honest she is but it's taking her a long time, partly on account of how she's ASD and keeps losing the plot!!

Willmouse, "high functioning" usually is used to mean Asperger syndrome or High Functioning Autism, rather than Classic Autism. It is a term that I personally find a bit tricky. People use it to mean those of us that can write like this and speak using excellently long words which we put together into all sorts of memorised phrases to make it sound like we know exactly what we're saying and exactly what effect our words will have on other people.

Often it's good enough that it gets us through life, but at a massive cost. Mostly we cope as younger children because all younger children are a bit silly with words. It's not so endearing when it's an adult who still can't understand why giving the correct answer to someone is often Jolly Rude, or why they are always laughing at things that others don't find funny (because our brains register the words differently to yours).

Example: Your best friend says to you "What you do you think of my new hairstyle?".

a) You have a best friend. We might not have any clue at all what makes someone a 'best friend', because it actually feels exactly the same whether they're a best/worst/anything in between friend. We find some people much more interesting than others so spend more time with them to learn interesting facts or compare interesting information. It's probably not the same

b) You'd think to say "Oh it's lovely!" or maybe "Well, I love the shade" even if you hated it. We'd say "I don't like it".

Well, they asked, and that's the answer. But they didn't want the right answer. They wanted to use it as a social thingy to say "I care about you enough to say nice things to you". We don't understand why. It's a mystery. For us, the truth and accuracy are often hugely vital. But over time we learn to say things that others want us to say, because otherwise our friends eventually don't want to be friends any more. Does it mean we can't lie? Nope. But many of us hate lying and/or are no good at it at all.

So, that's the dilemma of "high functioning". Normally it means that as time goes on, our speech can get us into trouble ten times faster than low-functioning people. Really helps if we get the right sort of retraining and some good friends who just explain what we got wrong (as mine do, bless them). Or people around us who know that we'll give them a straight answer, and actually like that in us.

You can pay privately for assessments, yes, but some areas are pretty fast at referring you on the NHS and some schools prefer an NHS report. No, I have no idea why. Very strange...

MrsPuddleduck · 13/03/2009 10:58

So its more likely that he has Aspergers then?

Maybee I'm in denial but can't help but think if he has got autism it can't be that severe if he has managed to get this far without it being detected.

I think he understands the concept of best friend. He certainly knows who he does and doesn't like and seems to distinguish between them eg there is a boy in his class who he simply doesn't like and says he is not his friend.

I will pay more attention as to whether or not he understands the words he uses, I think he does.

OP posts:
amber32002 · 13/03/2009 11:12

Could be anything. We can't tell. But it would sound like Asperger syndrome if it was an ASD, yes. It doesn't sound severe, no, - you'd have known from a very early age if he was learning disabled/unable to speak/using profoundly odd mannerisms etc.

Language - this really is a difficult one to explain.

If you see a word with more than one meaning, like "bank", what comes to your mind? Probably the most popular meaning of it - a place that stores money (well, they used to!)

OK, try these sentences:

He walked down a muddy bank

He went into the bank

What happens in your brain? Do you think that the muddy bank in the first one is a place full of money? If not, why not?

Most people's brains look for all the stuff round the words to find out what it might mean. Ours are often rubbish at that. Even if I can finally work out that it can't possibly be a muddy Lloyds TSB branch or something similar, my brain automatically produces an image of that, because that's what makes sense to me. So although I an 'work around' the problem, all my main brain bits are in the Wrong Place and want to do things very differently. Not necessarily worse, but certainly differently.

I'm very, very literal. If you say to me "take a seat", I'll always wonder why I should take it, and where to. I've learned not to say "where to?" any more, because people get cross.

That's the sort of thing. We can understand the words, but can really, really struggle with the context, which only becomes more clear as we get older.

sc13 · 13/03/2009 11:28

Hello Willmouse - we're waiting for assessment on DS (almost 3). It's a very stressful time but I find it does help me to learn as much as possible on ASDs, and even if DS has something else, as Amber says, I'll still have learnt a lot!
I think we're all looking forward to Amber's book (you owe it to the public ); I've also found Baron-Cohen's 'What is autism?' simple and useful, and he is well balanced in his arguments.

basementbear · 13/03/2009 11:48

Hi Willmouse. Just wanted to say that I am in much the same position as you, regarding my DS2. He sounds very like your DS, although he hasn't made friends at school (has a big brother he adores and says that he doesn't need any other friends ). His speech is fine and he has a great memory for all kinds of odd things, is a bit obsessive etc. Although I think it was a bit insensitive of the teachers to raise this at parents evening rather than before, it sounds like they are very willing to help, which is good. At our school the Ed Psych seems impossible to get hold of and although I have been asking since he started Reception in September, he is yet to meet her or be observed by anyone other than the teacher and the SENCO.

So I went down the other route, and spoke to my GP who referred him to the child psychiatrist at our local hospital. We have had one meeting so far, which was more of a history-taking session where she met the whole family, and in a week or so we are due back for a meeting with her, while DS2 has a session with the psychologist - I think they are going to play with him, talk to him one-on-one etc to get more of an idea about him and his ways, so that we can work out some strategies to help him cope. They also wrote to the teacher to get more info on how he is doing at school.

Just really wanted to let you know that you are not alone, and that there is help available! There is also lots of help and advice here on MN so keep posting!

Barmymummy · 13/03/2009 11:51

I am going through a similar thing too & have posted seperately about my DS. Keep us posted on how you get on, would love to hear how you are getting on, Debs x

MrsPuddleduck · 13/03/2009 12:09

Thanks for all your support. It's great to know that you are not alone in all this.

I think if it looks like the Ed Psych is going to take too long I will take him to the GP and see if I can get referred that way. I will pay for a private consultation if necessary.

OP posts:
troutpout · 13/03/2009 12:19

Oh that must have been hard willmouse
Rather insensitive to wait to parent's evening to discuss it too i think.Maybe it's me but i would have thought that they would have got you in to talk about it rather than wait to parents evening.
ds wasn't diagnosed with an autistic spectrum disorder untill he was 10. He has a dx of aspergers and dypraxia.They only started to talk about his and then i went for the dx at about 8
Yes there were signs before then but a lot was put down to immaturity by the school...in the end it was me who got the ball moving. So i just wanted to say that some of the behaviours only became more apparent (to the school particularly)as ds got older. It is a big spectrum...ds does not meet some of the descriptions.I think it's a good thing that they are looking to see if there is anything amiss now....it means your boy will get early intervention (if it's needed).

Ragged is right...he's still the same boy. He will be ok

troutpout · 13/03/2009 12:21

i took ds to the gp and she referred him to cahms

MrsPuddleduck · 23/03/2009 13:03

Thank you for everyone who has supported me.

I have been to see the headmaster today and after some discussion I am going to see my GP on Wednesday and get him referred myself on the basis that it will be quicker. If need be I will pay for a private consultation to move things along.

I feel a bit better about things now. Aparently the only behaviour he has which could be classed as autistic is that he is obsessive. I think there are far worse things to endure in life than that.

OP posts:
flyingmum · 23/03/2009 18:19

Have to say the school's been a bit insensitive but there is never a 'good' way to break the news. He does sound a bit spectrumy but it could also be just weak social skills.

How does your son do change at home? For me that's a biggie. Does he always have to have the same thing, ie the same plate or did he when a toddler?

Anyway my hug bug who is now an enourmous 14 year old did the hoovering and three hours of gardening this weekend - all for nothing without a hint of asking for anything in return. There are compensations!!! When he was younger he was obsessive about one friend (a girl) whom he was going to marry! This, needless to say had all passed by the time he was 8 or 9.

If your son has 'a landscape' as our consultant rather obscurely called it then one thing you need to remember is that THEY ARE ALL DIFFERENT so what one Asperger's person does another one won't. Amber, for example, hates showers, soaps, etc, my son - would live under the shower and gets through shower gel like it's going out of fashion.

All the best.

wraith · 29/03/2009 04:29

has your child grown an extra head or more arms.

no.

hes still the same depending on where on the spectum can let you know ballpark what to expect, but its more likly that a diagnosis will allow you to have moments of oh so thats what that was.

this is how it was or me with a late aspergers diagnosis, (late teens actually)
suddenly i had a name to go with my diferences and was able to find out that my sensory preerences were typical as were otherthings, he may be entitled to help from school or the government, and he may be permitted to use a laptop to take notes on ,
all depends o nwhat his diagnosis is but
noting has changed hes still the same person
youll just have a label to file his peculaities under.

wraith · 29/03/2009 04:34

amber its interesting you should mention the language aspect, in talks with some overseas aspergers friends we ound that we had developed cheat sheets of cliches and coliquilisms, both for use and responses to thier use i was wondering if you found the same.

ie go play in traffic,
litereal interpretation go get yourself run over.
actual meaning go away,
while both meanings are stored its the first thats seen/visualised and the second thats acted on.

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