Mild Spectrum Autism????

[daineal]

Hi,
Have been seeing various doctors with my nearly 3 year old boy as he's what I would call Hyperactive.
1st doctor said that if my son was 4 or 5 he'd definately say he's Hyperactive but as he's not yet 3 I had to take him to another doctor who specialises in younger children.
2nd doctor used the term above but said that these days it takes more than 1 doctor to diagnose correctly. In her opinion though my son has Mild Spectrum Autism & we will need to attend a nursery type setting for 7 mornings. My son will have 1 to 1 care while he's there each day for 2 hours & after the week he will be correctly diagnosed. This won't be until May/June time though so in the meantime we're left stewing & trying not to panic at the word Autism being used.
Question is, what else will they diagnose my son as having? Also, has anyone ever heard of the term used? I've Googled it but it's not that clear really as to what exactly it is. I've posted on a Parents Forum & 1 lady said it was a way of doctors etc not having to provide too much care for a child if they use that term rather than ADHD. Is this true??

[beefy]

Firstly - Don't panic.
Our son (7 now) at the age of 3 only neded about 4 hours sleep a night never slept through the day. We thought Hyperactive as well.He never slept a full night from he was born and we were told - He will sleep when he gets his own bed/own room/is one /two / three the list goes on.
He only started to sleep when he started playgroup .We came to the conclusion that he needed more stimulus than we could provde for him at home and that he needed a group of friends of his own age to play with to tire him out .
Sounds to me like your kid is ready for the next step - lots of thinking and learning to keep him occupied.
While the doctors are the experts you know your kid better than they do .

[NOG]

Autism is no longer called Autusm it is now ASD Autism Spectrum Disorder.
They have lumped all, OCD...Obsessive Compulsive Disorder, Ashburgers, Autism, ADSD, Disbractisia, Hypa Activity all togather as you will find if you are Austic you will have traits of lots of them.

Have a look here:

Autistic spectrum disorder Introduction - Health encyclopaedia - NHS Direct

The National Autistic Society - Statistics: how many people have autistic spectrum disorders?

Before we got a diag our son was first Hypa Active, then we went through a few and now we have a proper diag and he can cope...That is the point the child needs to accept, that they are differant and not the world accept them.

The idea is that there is a Spectrum of Autism from "normal" at one end to "Rain man" in the middle to "very bad" at the other...(I am not being rude) and he will be some where in that.

My Son went from Very Aggressive and sleeping 3 hrs a night at 3 to mainstream schooling at 11....ok with a bit of FUN in between.

The main point is you need to get you child assessed by the Local Authority and try to get a Special Needs Statement...STATEMENTED in school talk, so you get the help you need, they may offer Action or Action Plus but you need to get a statement.

If you need any more info...PM and I will send a fuller answer.

[Two_Sheds]

Don't panic, like everyone has said. There are lots of children in my school who are on the Autistic Spectrum. Some are struggling because their parents won't accept a diagnosis, so the child never receives the one-to-one help they need.
Good on you for trying to find out, and not burying your head in the sand.

[sweetcorn]

I have taught loads of children who are on the autistic spectrum within mainstream primary schools. Some were much more challenging than others, it's true, but most who had good support from parents were absolutely fine. As everyone has said, don't panic. Also, I do think a lot of problems occur because of 'labelling' children, and at your little boy's early stage, don't be too quick to want some sort of hanger to hang him on - he could just be developing at a different rate to other children.

So try to be laid back (not easy I know!), accept all the help that's offered, give him lots and lots of reinforcement of his routines and make sure he's always aware of any changes that might happen to a regular routine.

Having said all this, in some local authorities you have to be incredibly persistent and a total nuisance to ensure your child gets the help he needs/deserves, so needle them constantly if you feel he needs support he's not getting.

Most children with ASD achieve just as well (and some even better in some subjects) than so-called 'normal' children.

[daineal]

Third attempt to reply to thread.

Hi,

Here's D, tell me what you think...

He's very good with numbers, can tell me them up to 10 by sight. Recites them up to 20. Knows his colours & shapes. Is fascinated by doors, buses & taxis. Likes to get messy but doesn't like to be messy once finished. Has started to refuse food he likes as he gets messy eating it, he won't lick his hands. Can't seem to sit on a chair & is constantly up & down from the table. Walks on his tiptoes & falls over a lot. Doesn't sleep very well but even when we think he's had a good night will tell us he's tired.
Has very selective hearing especially if doing something he's chosen to do. Pre-school say he's great if 1 to 1 but not v.good in a group setting. We have him down to attend the same school as our daughter but if he needs statementing I'm not so sure if it's the right school for him. The school don't seem to be very helpful to other parents who are trying to get their children statemented. Obviously, I will push for it to try & get him statemented before he gets to school, if that's what he needs. Going from my experience of him & what the pre-school have said I think he may need it.
He has a very high threshold for pain as he had to have some blood tests done & didn't even flinch. But if someone brushes past him or accidently bumps the pram if he's in it he loudly tells them off. He likes to tell us which way we should go when he's with us & gets very upset if we don't go that way. We have to tell him in advance what's happening next otherwise he'll refuse to do it & have a very major tantrum.
What do you think?? I've looked on the various websites offered & I know what I think his diagnosis should be.

[moggssue]

My OH's son was diagnosed with Autism when he was 5, we stuck it out with him in a 'normal' school waiting for the final diagnosis. When he was 10 it was decided that what he has is actually dispraxia - he's now almost 13 and still in a 'normal' school with extra tuition. He is classed as special needs but we try not to treat him specially, if that makes sense! He is very difficult sometimes but knowing what the cause is helps in dealing with it (as does mountains of patience!).

Just hang in there, give your son lots of support and treat him as normally as possible. There is lots of help out there if it does turn out that he has special needs. Let us know how you get on, and dont forget we're all here for advice or support, or just a good old moan!

[Armorel]

Hi daineal,

I can really sympathise with your dilemma because twenty years ago, we were in exactly the same position with our daughter (autism is four times more common in boys than girls, by the way)

First thing to remember is - take everything the 'experts' say with a hefty pinch of salt! The only real expert in your child is YOU and, if they have any sense, they will listen to you and take on board your experiences.

I'm speaking here as a parent who allowed a Educational Psychologist to dissuade us from having our son, who will be 23 next week, formally diagnosed as Asperger Sydrome at the age of thirteen, on the grounds of 'it wouldn't be helpful to label him'. Guess what? Ten years later, he is now undergoing assessment with a view to a formal diagnosis of Asperger Syndrome

The problem with autism is it's a wide ranging condition - as NOG says, it's now called ASD of Autistic Spectrum Disorder. I think that was probably because there are so many different but similar conditions, that it was decided an 'umbrella' term was required so they could lump them all together. In America they actually have a diagnosis of PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified) which is about as vague as you can get!

I've never hear of anything called Mild Spectrum Disorder and, personally, think that's a daft term. Bear in mind that ASD often comes in combination with other disorders (our daughter is Autistic with Moderate Learning Disabilities but whether you could separate one from the other is very doubtful)

My son will have 1 to 1 care while he's there each day for 2 hours & after the week he will be correctly diagnosed.

This is an appalling and misleading statement to make. Your son is three - at that age you'd be very lucky to find ANY medical specialist who would stick their neck out and claim correct diagnosis will be made after one week of specialist observation/interaction.

As an example, at around the age of three, our daughter spent five days at a specialist unit undergoing all the observation/interaction stuff with a team of specialists (paediatrician, speech therapist, cognitive therapist, psychologist etc). The result? Well, the paediatrician stated that it definitely wasn't autism but he didn't know what it was and she would have to be reassessed when she got older. He also, very helpfully, added that he didn't think it was anything WE had done

Later she was diagnosed with Asperger syndrome which remained until she was in her early teens, at which point we had a scheduled meeting with her Paediatrician (a different one because she was older). We put it to her that our daughter was not Asperger Syndrome and that she was, in fact, autistic. All our observations, research, reading etc pointed to that conclusion. The paediatrician agreed and offered to change the formal diagnosis. It makes you wonder how long our daughter would have continued with an incorrect diagnosis if we hadn't insisted it was changed ....

If your son is on the Autistic spectrum, you'll probably find that he works much better visually than aurally. Spoken instructions may not be heard/understood/absorbed and lead to intense frustration. It may be very difficult to achieve eye contact with an ASD child so you may have to practise this a little at a time until he can manage a few seconds. You may also have to take steps to provide as calm and non-distractive surroundings as possible. ASD children often suffer from hypersensitivity to external stimuli - it could be that he finds a high level of background noise almost unbearable. Some ASD children cannot stand certain sounds, textures, even strong wind or strong sunlight can aggravate them to distraction. It might be worth observing him to see if anything in particular 'sets him off'.

Get creative with charts to help him understand his day or any other area of difficulty. For our daughter we had, and still have, an A4 printed two week chart (you might use a one week one) with colours for each day and a box to fill in. Put the chart on the wall and add pictures to help him understand what is going to happen. Our daughter's school had a similar aid in the form of a board with boxes on the bottom, the board had sticky Velcro on it and they could change the symbols day-to-day to show her what lessons she would be attending, the boxes held prompts or tools for the lessons. By way of a reward, once she'd completed several tasks, she got a Free Choice card which enabled her to do anything she wanted to do.

You may find that the concept of 'reward' is a tough one for an ASD child to understand but some catch on to it very quickly

This is the website for the National Autistic Society which may be able to give you help locally by putting you in touch with someone who can chat to you and answer any questions you have.

The National Autistic Society - Home

This is an inspirational piece written by Emily Perl Kingsley called "Welcome to Holland" which I was pointed to when our daughter was in the process of diagnosis. I think it's very appropriate to a lot of situations ...

Welcome to Holland

- Be prepared to do lots of reading and research - being as well informed as possible will enable you to ask questions when professionals say things that aren't entirely clear. We've found that some professionals respond very well to well-informed parents while others find them quite threatening.

- If in doubt, put it in writing because it's much more difficult to disregard a formal letter than it is to 'forget' a phone call.

- Get yourself a 'Bloody Minded' hat and wear it often!

If you want to contact me by private message, please do. I'll be happy to help or advise in any way I can.

Armorel

[Seahorse]

One of my sons is ASD and the behaviour you describe is quite similar to his. However, three is still very little and I wouldn't rush into any diagnosis yet (and nor should any health professionals).

I can't add much to the great advice above but I would emphasise two of Armorel's points. Firstly, the best experts on your child are you and your partner - if you feel that someone is telling you the wrong info, or making the wrong judgements, stick to your guns. And secondly, although it's part of the first point too, get that 'bloody minded hat' and staple it to your head. I have had to fight every step of the way to get my boy the care and help that he needs and deserves. It's all out there but sometimes others aren't very helpful in showing you where!

I hope things go well for you. ASD can be hard to manage but it can also be very rewarding when your child makes progress.

[daineal]

Thanks to everyone who's replied to this thread. I've had some great advice. I know D's still very young at nearly 3 to be diagnosed with anything but from as soon as he could move, I knew there was something different about him.
We had him in pull up nappies before he was 1 as he couldn't lie still for a nappy change. It was as if we had a goat instead of a child as he constantly climbed on the furniture. He'd climb onto the table & fall off, onto the window ledge & try to get out if we left the window open. Into the oven & the washing machine etc etc..
I feel though as if I'm actually getting somewhere now with him as I'm finally being listened to. I do have a "Bloody Minded Hat", I think I always have had one & I make sure I wear it most of the time. And you're all right, we as parents are the experts when it comes to our children.
From the sound of it though even once he is diagnosed there's still a long slog ahead for us as a family. One that we're more than capable of rising to.

[sweetcorn]

Difficult to tell from your description exactly what he's like, I guess the 'experts' have certain criteria they look for. It does sound as though he may need careful help with coping with changes/things not going his way etc. But a lot of children are like that ...

The reason the school is not keen to statement children is money! Pure and simple!! Also, I have found that the infant stage is the worst, partly because it's a given that infant teachers can cope with these children without any support, and partly because it is (quite rightly) thought that a diagnosis of a particular problem is not necessarily clear until the child reaches about 7 - when they go to the juniors. On many occasions, I had fought like mad for a child to be statemented, only for it to happen the minute he/she trotted off to the junior school.

Remember that in many european countries apart from ours, children are not expected to conform, take multitudinous tests, sit for ages being taught in a formal way etc, until they are about 6 or 7 years old, when many children are far more able to cope with it. In a school in Holland for example, D might well manage very well, but in a situation where he's expected to sit for a long time, or do a particular task he doesn't want to do, he may display behaviour problems. My point is, it doesn't necessarily mean he has a 'problem'.

I would emphasise again the need to be a pest to get the help he needs. You're quite right to have your Bloody Minded Hat firmly superglued to your head. Be supportive (to both your son, and his teacher), persistent, polite and calm, and you stand a good chance of getting the best for your son.

It sounds to me like you will.

Often teachers want exactly the same as you, but their hands are tied.

By the way, I once taught a little boy with Aspergers to play the violin - he got distinctions in both grade one and grade 2, before he moved on to secondary school! These children can be a joy, and their honesty is often quite sobering!!! Hard work, though. Good luck!

[beefy]

Hi,

Here's D, tell me what you think...

He's very good with numbers, can tell me them up to 10 by sight. Recites them up to 20. Knows his colours & shapes. Is fascinated by doors, buses & taxis. Likes to get messy but doesn't like to be messy once finished. Has started to refuse food he likes as he gets messy eating it, he won't lick his hands. Can't seem to sit on a chair & is constantly up & down from the table. Walks on his tiptoes & falls over a lot. Doesn't sleep very well but even when we think he's had a good night will tell us he's tired.
Has very selective hearing especially if doing something he's chosen to do. Pre-school say he's great if 1 to 1 but not v.good in a group setting. We have him down to attend the same school as our daughter but if he needs statementing I'm not so sure if it's the right school for him. The school don't seem to be very helpful to other parents who are trying to get their children statemented. Obviously, I will push for it to try & get him statemented before he gets to school, if that's what he needs. Going from my experience of him & what the pre-school have said I think he may need it.
He has a very high threshold for pain as he had to have some blood tests done & didn't even flinch. But if someone brushes past him or accidently bumps the pram if he's in it he loudly tells them off. He likes to tell us which way we should go when he's with us & gets very upset if we don't go that way. We have to tell him in advance what's happening next otherwise he'll refuse to do it & have a very major tantrum.
What do you think?? I've looked on the various websites offered & I know what I think his diagnosis should be.

I'm not being funny but D sounds exactly like our 3 year old girl Jorja and her brother Paul.She learns much more quickly than her older brother Paul (now 7)because she picks up so much from him.Has D an older sibling?
Everything else I can safely say I've seen in both of our two at that age.
We never made a big thing of doctors etc and never told the children "This is going to hurt "etc and a few mins after the injection they are both fine.As for telling others off who invade his space that seems natural enough - he is just trying to create boundries and make his own space.As to telling you which way to go our boy would suprise me all the time with what he remembered places we had been and was more than capable of remembering the way and landmarks along the way.
D sounds like he is more independant and headstrong than anything else.
Don't be to quick to try and "define" him as one thing or the other.

[NOG]

The big test is to bear hug him.....if they are ASD they will freak...or "steal" something..get a friend to put his wallet on your table and then you put it in your pocket with him watching...if he is ASD he will go mad and make you give it back.

[MrsC]

Hi,
Have been seeing various doctors with my nearly 3 year old boy as he's what I would call Hyperactive.
1st doctor said that if my son was 4 or 5 he'd definately say he's Hyperactive but as he's not yet 3 I had to take him to another doctor who specialises in younger children.
2nd doctor used the term above but said that these days it takes more than 1 doctor to diagnose correctly. In her opinion though my son has Mild Spectrum Autism & we will need to attend a nursery type setting for 7 mornings. My son will have 1 to 1 care while he's there each day for 2 hours & after the week he will be correctly diagnosed. This won't be until May/June time though so in the meantime we're left stewing & trying not to panic at the word Autism being used.
Question is, what else will they diagnose my son as having? Also, has anyone ever heard of the term used? I've Googled it but it's not that clear really as to what exactly it is. I've posted on a Parents Forum & 1 lady said it was a way of doctors etc not having to provide too much care for a child if they use that term rather than ADHD. Is this true??

hi, didn't think a gp could diagnose ASD or anything else, that's why we have specialists? some good points raised in the posts I have read, please don't panic, got to agree with Beefy's posts, take care

[daineal]

Well it's May now so I decided to get back in touch with the specialist who last saw us in March to see what's happening. Spoke to her private secretary who assured me that the referral letter for the CDU unit did go off & very kindly put me through to them as I'd not heard back from them. Needless to say I got to speak to a very snotty woman at the CDU unit who wasn't very pleased to be talking to me at all. You know the type I mean, she's like the receptionist at the doctors surgery who thinks she's GOD. Eventually got her to let me know when we'll be seen at the unit, 17th-25th of June but she couldn't say what time to be there. Just that it'd be in the letter we receive. I explained that we'd not had a letter yet to which she replied, "no you won't get it yet as the appointments just been booked". Funny how they never give you their names isn't it. I was too mad to ask for it but I'm sure I'll find out who she was when we attend in June.