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How does an Autistic Spectrum diagnosis help the child?

(24 Posts)
wem Sun 23-Aug-09 13:27:46

My SIL has been getting worried about her almost 3-year-old's socialisation. She talked to a HV about it and was frustrated that she immediately suggested autism instead of starting with some practical ideas to try first.

Some of his behaviour has made me think of AS, but I know very little about it and I'm not about to tell SIL my thoughts on the matter if she's reacted badly to the HV suggesting it.

I think she was irritated because instead of offering help/ideas the HV went straight to 'labelling' her son. But, I do wonder that if SIL is after practical help, perhaps a diagnosis would help her get that.

What happens once a diagnosis is made?

debs40 Sun 23-Aug-09 13:45:18

Wem, my experience to date (with a 6 year old) has been that whilst undergoing dx, he has been offered help to assist with some of the more complex and distressing problems he has e.g. sensory issues relating to clothes and food and his hypotonia problems.

I suppose what I would say is that you need to look at what the issues are. They may or may not be related to ASD but if they are issues which imact on daily life, they need addressing and that, rather than a dx, should facilitate access to services e.g. a referral to SALT etc.

I think the situation changes when they start school as it is easier to get the help required with a dx of some sort but the school should support the child and not the dx and to be honest this has, fortunately, been our experience to date.

wem Sun 23-Aug-09 14:06:08

Thanks debs. None of his behaviours are extreme or have a huge impact on daily life. SIL is just getting worried about his anxiety around other children. There are other things that stick out to me, but as I say, I don't know much about it.

I imagine if he is on the spectrum it's at the very mild end. So perhaps without major problems that can be higlighted with a diagnosis, and therefore addressed, it's unlikely a diagnosis would help much.

He is a very early september birthday so it's going to be another 2 years before he's in school, though he is starting at a nursery soon.

streakybacon Sun 23-Aug-09 14:07:05

Knowledge is power. If you know what you're dealing with you can work on solutions. With a dx you have the means to access the support you need, whereas a lot of schools won't give adequate support without one, despite evidence of problems existing. Most parents who have gone through the dx process will agree that you're better off having one than not. It doesn't magically open doors and nine times out of ten you'll still have to fight for what the child needs, but very often you haven't a leg to stand on without a formal dx.

It does seem a little early for the HV to be jumping on the possiblity of ASD, but even if your sis does go ahead with referral and assessment she might not get a dx at this stage - a lot of psychiatrists adopt a 'wait and see' approach for very young children and don't like to make a decision until they have school input and opinion. If that happens and problems continue, it would be a good idea for your sis to look at re-referral a couple of years later and not just accept a no-dx decision as definite. It's difficult to dx so early as problems could be caught up as the child matures, but not always.

debs40 Sun 23-Aug-09 14:23:29

I think ASDs are a hotch potch of different problems and issues e.g. socialisation, sensory issues, routine issues and each aspect tends to be referred to specialised services.

The fact is that streaky is right, at this age, often it can be difficult to tell, so there may not be a dx. However, it shouldn't stop help being made available to deal with the issues.

Many children have 'ASD traits' which may or not need attention depending on their level of severity irrespective of whether they get a dx a full blown and specific ASD. Unfortunately, it appears there is a pretty inconsistent pattern across the country in relation to access to services and the availability of dx.

If your SIL is worried that HV is jumping the gun, she could see her GP for advice

HelensMelons Sun 23-Aug-09 14:53:15

He is very little so it may not be asd; however, if he does end up with a dx there are a couple of really helpful safeguards.

First of all even a child with 'mild' asd (high functioning autism or aspergers) has difficulty around social communication which will effect them at home, school, with peers to some degree - this can be as simple as being unable to communicate in the classroom "I'm stuck" - some schools are fantastic, others are more likely to provide the best help they can when the child has a statement of special educational needs - a formal dx can provide a safeguard that helps to ensure that the child receives 1 - 1 or a specialist unit - whatever is deemed appropriate.

This has certainly been the case for my ds.

The other safeguard I have found useful is that my ds's label of asd means that I can explain to other members of the family, friends, his peers group that ds, for example, gets upset when rules change suddenley in a game, or an explanation as to why he plays the same games on the playstation, etc. I personally prefer to have that explanation than for him to have other less complimentary ones like weirdo, etc ykwim.

This is only my personal opinion and experience it is not an easy journey but a dx has totally worked in his favour, and hopefully will continue to do so when he becomes a hairy teenager!

streakybacon Sun 23-Aug-09 15:06:43

I just want to add that it's important to think about life beyond primary school. A child with 'mild' AS/ASD might manage reasonably well in the comparatively straightforward world of primary but as they move into secondary the world changes, there is more emphasis on non-verbal communication, they can become more isolated because they find it harder fitting in socially. And that's without the challenges of the actual work.

Beyond school it can be even more difficult. Try not to focus on the first few years of school and assume everything will be fine because the problems seem quite mild. With age they become more defined and as any parent with a diagnosed ASD child will tell you, early intervention is vital so the sooner you can get started, the better.

And I'll say again that I'm not suggesting the child in question DOES have an ASD, it's just important to look at the bigger picture.

wem Sun 23-Aug-09 16:10:47

Thanks all for your insight. I might gently encourage SIL to look into a diagnosis if she shows any move in that direction, but I'll hold back for now if she's dead against it. Don't want to put my foot in it, and she knows him best after all.

lingle Sun 23-Aug-09 16:50:03

"frustrated that she immediately suggested autism instead of starting with some practical ideas to try first"

I would feel exactly the same.

Helping with socialisation is not rocket science. The key tips I have read and follow with success are:

1. Play a wide variety of games with the child, gradually increasing their range month by month. For instance, if he likes trains, you might start by just being there at the track with him; then start driving your train too; then make your train bump into his until he's learnt to find this funny rather than intolerable (this bit is extremely important- you need to help them be more flexible); then start taking animals for a ride on your train's trucks and encourage him to do the same; then start naming the stations after places known to him..... keep expanding it, increasing the degree of flexibility you expect and the complexity of the pretend elements. Play games of many types - starting with peekaboo, move on to chase then when he is ready to hide and seek, gradually increasing the sophistication and overcoming his resistance step by step.

2. Starting with the games he likes best and already plays really well with his mum, move to having him play them with other trusted people, eg his dad or elder siblings/cousins - your kids maybe?

3. Have playdates where not too much is expected for most of the time eg he watches a video with another child. But have a few moments where he has to share or engage eg prepare a snack of popcorn that's in one big bowl so he has to use the same bowl as the other child. As his comfort levels increase, increase the proportion of activities that will require interaction.

There are several fantastic books that train you to help your child socialise. They tend to assume the child has ASD but are useful for any child who finds peer group relations hard. My favourites are those published by Hanen as they are so clearly written (www.hanen.org). "More than Words" or "Talkability" would be of great help to her but only if she can avoid getting paralysed with fear every time she sees the traits her lad shares with children who do have autism.

There is no secret sociability pill that you get given by a doctor after being diagnosed with ASD. The diagnostic process has its uses, which are set out in this thread, but for a mildly affected child, the answers are probably already out there in print for her to find.

LilyOfTheMountain Sun 23-Aug-09 17:02:45

I think it is worth suggesting assessment (giving a name is bad behaviour by a HV, even a PAed takes time to decide!) early on for the very practical reason of waiting lists and getting seen; once you are on that list you can try everything to change it, but if you cannot and then seek assessment, you still face the wait which equlas time wasted and very posibly by then a start at school unsupported (this is from bitter experience though that was entirely my own fault). however if you request APeds and then it improve- you can just cancel.

It's very difficult to know what to do to help a child who may be on the spectrum without knowing the child. If it is mainly socialization then getting oput often is great but for some children counter productive; salt is warranted but rarely accessible at that stage; and learning styles often can vary so much that a name/label can give better clues to that than you'd guess.

The truth is, when you get a dx (I have two boys on the spectrum) nothing happens in almost all cases, unless aprents seek it. But you do get access to the NAS, possibly support in school should you seek it, and in my experience it's very useful as a sign poster towards things that will actually help rather than grabbing at straws.

If she is definite that there are issues but anti label, she might benefit from BIBIC (they ahve a website); they assess and aim to help yopu change aspects of issues without giving a DX (and do not require one); they work with everything from dyslexia upwards, and before you book you get a free one hour call from a therapist to see if they can actually help.

Phoenix4725 Sun 23-Aug-09 18:19:04

and now they only charge a admin fee as well, would say found Bibic great help#

daisy5678 Sun 23-Aug-09 19:28:07

I have to say that labels/ diagnosis are more or less helpful depending on the place people live in. Here, Statements of SEN for help at school are almost impossible to get now without a concrete dx to 'prove' that the needs are substantial and unlikely to go away without help. Also, any help from Social Services or the autism support service only comes with a concrete dx. Everyone's attitude changed when J was dx'd - previously SS and the LEA had been slightly arsey about providing what J needed. Post-dx, they were actually quite apologetic at the LEA. Also, the autism dx gives us access to regular CAMHS help, which benefits us massively. Also, DLA etc. are easier with a concrete dx.

Without judging anyone's choices, I must admit that I am confused about why a child on the autistic spectrum should not receive a dx of autistic spectrum disorder. I suppose I find it frustrating when a professional 'won't label' and confusing when a parent doesn't want the dx. Not giving the child a label will not remove the condition and it almost implies that autism is something to be ashamed of - to me, anyway. I don't think it changes the child to have a dx - if it's been done well, the dx is valid and will signpost further help and also let other people know why the child is the way that they are.

Especially as the child gets older, people will be less patient and helpful without a clear dx to pinpoint where the issues come from. A child might be mis-labelled as naughty - I have seen it happen in my job and it destroyed his chances of having a decent life. Had massive behavioural and social issues from an early age, though OK academically. Got more and more isolated and angry and was only dx'd at 14. He now understands himself a lot better and doesn't blame himself any more for being different. But it's too late - he's lost too much time wondering why he's different and getting angry and agressive about it.

My sister was dx'd with Aspergers as an adult - she found teenage years very traumatic for the main reason of feeling so different - she wishes she'd been dx'd earlier.

For me, the dx doesn't 'become' the child. And life without a dx can make things harder than they need to be. If they're autistic, they're autistic.

(My opinion only smile )

debs40 Sun 23-Aug-09 20:07:47

Givemesleep 'Especially as the child gets older, people will be less patient and helpful without a clear dx'

I couldn't agree more.This is the main reason I have pursued a dx. Some of DS's behaviour is becoming more age inappropriate as he gets older and having a dx of some sort will help people understand.

lingle Sun 23-Aug-09 20:22:10

I don't seek an ASD dx because I don't think my son is autistic smile and neither I nor his school think it would be useful for him. The gap between him and his peers is narrowing as his language kicks in and he learns to explain his sensory issues ("I'm scared of handdriers mummy" etc).

But he has a lot in common with kids on this forum at the moderate to severe end of the spectrum - as does my other son - it's fascinating stuff smile. And it doesn't matter if I'm wrong about the autistic bit (not that we'll ever know because the borderline is just a matter of debate varying from doctor to doctor and country to country) so long as school and I are meeting his needs.

debs40 Sun 23-Aug-09 20:25:04

lingle - I can understand that too. If you are getting the understanding and support you need, that is the most important thing. Sometimes schools are not so great without a dx but that has not been my experience. I suppose it just gives you a short hand explanation and saves repetition each time he changes teacher/school etc!

daisy5678 Sun 23-Aug-09 20:54:27

Obviously I can see why you don't want an inaccurate label. If he doesn't have an ASD, of course a label of it would be pointless and wrong.

But if a child has autism, they have autism. That's when I'm saying they should get a dx.

maryz Sun 23-Aug-09 21:35:40

I agree with streakybacon and others - a diagnosis may not make much difference to a small child with mild aspergers, for example.

However, when that child is a teenager, and is continuing to have social issues, lack of understanding of how the world works, etc. a diagnosis makes the difference between them being "a child with problems" and a delinquent.

When ds was diagnosed at 9, he functioned pretty much normally in his class, with a few social issues, mainly due to resenting authority. He then managed fine until the age of 14 when we realised that he simply wasn't growing up socially as the other children were, and the problems at school rapidly got out of hand.

Without a diagnosis he might well be in jail, aged 15. With one, we are hoping that he will be given the time to grow up.

Suzy123 Sun 23-Aug-09 23:14:45

My child was diagnosed ASD when he was 3 years old. I didnt want him labelled at first because obviously being so young i wanted to wait and see how he developed. I am still unsure that this actual diagnosis is right (altho he def. does have special needs) and i am seeking a second opinion now hes older. He is now 11 and because of his diagnosis he was given 1:1 help in mainstream school. He has had 1:1 help throughout nursery and school as well as speech and language therapy regularly. So i would def. seek a diagnosis as this will help him to get a statement at school. Your child does not need to know the label (mine doesnt know), not because i am ashamed, but because i never wanted him to feel different which i believe knowing would. At the end of the day, its just a label and if your child develops normally then he'll never need to know. Hope this helps.

Suzy123 Sun 23-Aug-09 23:38:30

Sorry just a further note, my youngest child of 5 displays some ASD traits (scared of noise of hand driers and hates buttons on his clothes). My 11 year old never had a problem with buttons although did with hand driers (tho this disappeared in time). However i do not believe my 5 year old has ASD as extremely sociable and has no learning difficulties like his older brother and changes of routine dont bother him in the slightest. I think diagnosing ASD is so difficult because sometimes 'normal' children display similar behaviours at times, i.e. when my oldest child was about 7, i took him to a bowling party. At this time he used to jump up and down on the spot constantly, flapping his arms when he was excited. At the party another child did exactly the same thing yet I knew 100% that this child did not have ASD or any other special needs. Which is why,i guess. i still question my oldest son's diagnosis.

saintlydamemrsturnip Sun 23-Aug-09 23:38:42

Did the HV actually say she thought he had it or just mention it as something to be ruled out?

In some ways the HV is right because if he does has ASD then the easiest way to access good support is via a diagnosis (you then get access to local schemes etc- for example here if you are heading for an ASD dx you can get 15 hours a week 1:1 support - without that you might get 1 hour a week portage). So it might be worth ruling out.

What sorts of things does her 3 year old do?

wem Mon 24-Aug-09 08:21:38

I've been reluctant to say the things I've noticed, as the only ideas I've got about autism/aspergers are those I've picked up from mass media - never the most reliable of sources - and also I've only known a couple of 3-year-old boys so I've not had much to compare his behaviour to. I could have easily got this all wrong.

Anyway, this is what I've seen:

His speech isn't very clear. I find it hard to understand him, compared to friends' children at the same age. A lot of the time he seems to talk through a sort of forced smile, so it all comes out quite 'hissy'

He seems obsessed with numbers. He learnt letters and numbers very early, and has always enjoyed counting, and would frequently just start counting 1-10 repeatedly. On one recent occasion having sat quietly for a long time, not doing much of anything, he stood up and started counting backwards, first from ten - 10,9,8,7 etc., then from 11 - 11,10,9,8, then from 12, until he got to 20, then repeated 20 to 1, louder and louder, until SIL told him to stop.

He is not physically confident, and fairly uncoordinated, though he has recently got very good at running .

I haven't seen him with other children his own age, though this is what SIL is worried about. Apparently he refuses to play with them, preferring to play by himself, and objecting if they approach him and try to play with him. He was almost oblivious to my dd until she started crawling, now he is quite nervous of her and backs away if she ever crawls towards him or his toys.

I don't know, I could be seeing things that aren't there, and misinterpreting toddler behaviour. And I feel somewhat disloyal to SIL typing this all out.

lingle Mon 24-Aug-09 08:56:07

"And I feel somewhat disloyal to SIL typing this all out."

I can understand that. You have to follow her lead.

My boy is number-crazy as well. The key is to connect their interests to the outside world.

So with numbers try:

- if you are with him where he is waiting for something to happen (birthday cake about to come in the room, about to do a jump, etc, etc), try doing a countdown with him regularly. After about 20 times he may start to seek you out to play the game with you. Tell him you are a rocket, crouch down and then blast off after a countdown. Expect to have to do this every time you see him - at least 20 times - before he starts to respond. Your daughter will find this amusing too I expect so you can see how they might eventually do it together.....

- tell him "I'm 35" or "I'm 21" or whatever number. Keep telling him how old your daughter is "DD's 1". "You're 3". Assign each person a number according to their age (or reported age). DS2 seemed to get more easy with the neighbour's kids after he learnt that "Lucy's 2, Alex is 5", etc.

The more you tune in, the easier it gets and the more ideas will occur to you. Your SIL may take a long time before she is willing to see a paediatrician and you have no choice but to respect that so you might as well get on with helping your nephew in the meantime. Who knows she might find your techniques inspirational.......

jasdox Mon 24-Aug-09 10:27:36

I'm trying to get a dx, his still at pre-school, but to me the signs are v. clear, and though the nursery are great, and he is getting support without it. I feel as he gets older it will help him to get the support he needs. I think if I wait longer and problems arise at school and it will it could takes years to get the support/understanding and this would enhance the issues and hence producing additional problems on top - self esteem, confidence, depression, often associated with mild ASD/AS. The label does not change it, we do not have to flash it about just use when it is appropriate.

mynack Thu 20-Mar-14 13:53:00

yes, sorry I haven't logged in for a while

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