DS with possible ASD - but we are able to very his routines - does that mean he can't be on the spectrum

[BumptiousandBustly]

Our DS who is nearly four has been showing various signs that he may have ASD - including a very fixed bedtime routine - needing to know when things would happen - getting upset at very loud noises, show high levels of anxiety about leaving the house, being very hyper at transition times such as bedtime or before going to pre-school etc.

I spoke to a friend who is a teacher and he suggested that we try and vary his routines and see how he coped with that. Well last night I managed to leave out part of his bedtime routine - as I said mummy was in a rush adn there wasn't time. and this morning, I managed to drop him off at pre-school and not go in with him to find his name - just left him with the teacher - now he was a bit forlorn but not in meltdown.

So now I am really confused. Does this mean that he CAN'T have ASD, or that he probably doesn't, or could he still? And if not that, then how do we account for all the stuff he is doing?

no, it does not rule out ASD. DD (almost 4) has autism (she is not mild btw) - she does not need routines at all.

It doesn't necessarily rule out ASD.

My ds1 (ASD) had to do things in a particular way but his brother (also ASD) wasn't as bothered. He (ds2) liked the general structure of things to be the same but didn't have ds1's need for people to always say/do the same thing each time.

No. It doesn't rule it out. Ds2 doesn't obviously react to changes in routine.

Routines didn't bother DS when he was young - the originally happy go lucky type at that stage he was. It's changed significantly as he has got older.

Now at 7 school report unexpected changes to routine as a major issue - school phoned yesterday as unexpected supply teacher was too much to handle for DS ( I have met her - wonderful woman, it's just he was expecting to see his usual teacher and had no warning - he'd have been fine if he'd known the night before).

I'm "Mum" therefore DS trusts me above all others, therefore deals with routine changes better if I'm there when they happen. Changes to routine are not an issue at home.

Where I do have issues is changes to his home environment (the fuss when I tried to put up new living room lampshades last week was nuts!) I've been trying and failing to redecorate for 18 months. Routines at home aren't an issue apart from the transition between term time and holidays.

Maturity levels - differing sterotypical traits seem to fluctuate as kids grow and change, or at least that's been my experience. You resolve one issue and summat else pops up!

No asd child is identical to another so any one trait will never be a "definitive marker" by itself. It's a very complex triad of impairments.

No it doesn't necessarily rule it out.

My ds (9 with AS) is able to cope with some changes to his routines and can handle other changes if things are explained to him properly beforehand. I actually think he is becoming more able to cope with routine changes as he gets older, but if there's too much change, the anxiety builds up and up until he can't cope. It doesn't necessarily mean meltdown, its more common for him to develop soem tics, sleep problems and physical symptoms. Often we won't know what's at the root of these 'symptoms' until we've made a concerted effort to drag it out of him.

That said, there are some things he just cannot cope with being changed at all. For example, last weekend dh decided to blitz the boys' bedroom to make room for storing all their Christmas presents (and because it had become a complete tip over the holidays). On the face of it ds1 coped with this, although was very tetchy and obstructive during the procedd. However, by Monday morning he was clearly exhausted, really snappy and stressed and actually looked ill. On talking through how he was feeling, it transpired that he simply couldn't cope with some of the changes dh had made. He had moved his computer games because there are now too many for their original storage place, moved one or two toys slightly (and I mean moved them back a couple of inches here) where they are stored on top of a cupboard, made the boys get rid of some of their old toys and books and finally ds couldn't cope with the room being pristinely tidy - he said he felt like the space was crushing him. It was causing all sorts of other sensory problems for him and he hadn't slept at all since Friday (the night before dh made the changes). I have now moved the toys and games back to their original positions, relaxed the 'absolutely nothing to be left out' rule and promised to store the old books and games in the loft rather than give them away. He is still not happy that his broken printer has had to go and is not really ok with the old toys and books not being given back, but he is visibly more relaxed and slept through last night for the first time this week.

If I had done the room with them, I would have known from past experience what I could and couldn't change, but I was ill and dh was a 'bull at a gate' about it and determined to dictate terms. It has been a good learning experience for dh though, who often thinks I am over-thinking what ds can and can't cope with.

At school he can cope with most changes, but there are some he can't. For example its fine for them to switch two lessons round, or even cancel one and can even handle everything changing for school play rehearsals (unless it affects ICT or guided reading, then he gets very stressed) but he can't cope if they move where the children are sitting in the classroom or rearrange the furniture. The only exception to this is in the run up to christmas or the summer holidays when, not only does the timetable change a lot and he knows he is going to be in a different classroom with a different teacher next term (summer) but they also change the way the classrooms look (putting up christmas decorations, moving stuff to fit in a tree etc). He tends to get very stressed and stop sleeping at these times.

I suppose that makes him similar to coppertop's ds2, because he can cope with a certain amount of change in routine - provided the basic infrastructure of his world doesn't change, iyswim.

Bochead explained it much better and far more succinctly (sp?) than I did.

Moosemama

Your comment on the basic infrastructure not changing really resonated. Any tips on how to tackle redecorating? (I wanna repaint in the same colours but even that is freaking him out!)

Thankyou so much for your responses - Its actually reassuring in a way - as I am starting to think sometimes that its just me going mental - or that DS is absolutely fine but DH and I are failing him as parents, because he DOES have some traits that are worrying - and if he is fine - then it must be us doing it wrong IYSWIM. So at least I can still say - well this is one possible explanation for what is going on.

Its interesting about the physical symptoms as well - as DS has had a loose bottom for a few couple of weeks now - including poo accidents at night which he NEVER had from when he was first dry at night.

I have also noticed that he tends to bedwet sometimes when things are changing - so he was bedwetting at the end of the summer holidays - when pre-school started again - and then a few weeks later it stopped.

We are seeing a the community pediatrician in March (hopefully) so I am trying to gather as much info for him on DS as possible - (hence the advise to try and vary his routines to see what he did) - so that at least then the ped as as much info as possible to hopefully give us some idea about what is going on.

Sorry Bochead, we have the same problem.

We had a leak from the roof in the boys' room last year, got it fixed and need to replaster and redecorate but he won't have it. His brother is desperate for the babyish Bang on the Door Alphabet stickers to go and really wants a more grown up scheme with a large vw camper decal on one wall - but ds1 insists that he doesn't want to change anything in the room. It has been the cause of endless arguments over the past 12 months and we are no closer to getting it done.

We are supposed to be having a new drive this month, but have had lots of tears because he likes it the way it is. It is a quagmire of mud and grass that has grown through the gravel, accompanied by dangerous uneven paving and edging stones. Quite frankly, its a health hazard and I am constantly ashamed of how bad it looks, so it has to be done - but I'm dreading it.

We're also planning a small kitchen extension this summer, but as he won't even let me change the ancient and decrepid kitchen table (which we bought second hand 20 years ago) I dread to think how that's going to go. Again, no choice though, we can't all sit around the table since we have had dd and I have to eat on my own in the living room. I also only have three drawers, one single under-sink cupboard and one double cupboard that you can't get into the back of to store all the dishes and food for a family of 5, plus ds1's gf food has to be stored separately. Its the nightmare kitchen from hell!

Its so frustrating isn't it.

Bumptious, I think many of us have been where you are. I still question ds1's diagnosis and wonder if I've/we've/they've got it wrong sometimes when things are running smoothly. Then I remember its because we live 'around' him and meet his needs and that's why things are running smoothly!

Its good that you are getting it looked into while your ds is still young. My ds didn't get assessed and diagnosed until he had a breakdown when he started junior school. He finally got his diagnosis last January when he was almost 9 years old.

Bed wetting and diarrhoea are two of ds's anxiety symptoms. He also developed reflux and migraines when he went into the juniors.

He has Aspergers, so is quite high functioning and as he gets older is becoming more able to talk things through and explain what's bother him (as with the tidyness crushing him, lol) - although we need do have to start the ball rolling and work on getting the information out of him as he isn't able to just volunteer it and needs lots of help to sort it all out. We have found out a lot more about his sensory problems recently, as he becomes more able to articulate the physical feelings he gets (he has had help from an Ed Psych and ASD Teacher with this), whereas we were unaware he had any sensory issues at all when he was younger.

When things bother him he tends to become more and more anxious, rather than having a meltdown and sometimes we will be unaware of the problem until it all gets too much for him. He does have outbursts sometimes, but has probably only had a handful of full-on meltdowns in his life.

Surely the need for routine is a symptom of anxietyand a need to feel in control. My DS is quite good at changes in routine, but has other things he does to control his anxiety, such as certain movements with his hands, touching door handles in a particular way, and until he was at least 15 lining little cars up on the landing. He is17 now and still doesn't like us varying the route home, although he will accept it without meltdown now. He went to the dentist today (has to have sedation) and had to take something to hold. And yet to an outside observer he often appears "normal".

Routines are not part of the diagnostic criteria, just one possible symptom of the element of rigidity.

Other symptoms coukd be playing with the same toy in the same way, talking about the same topic all the time. It doesn't necessarily mean they can't be directed to change behaviour, only that they wouldn't if left to themselves iyswim.

My DD is being assessed for autism and has no issues whatsoever with routines or rituals. She doesn't have meltdowns or sensory issues either.
Her only traits are severe speech and language delay, shown no interest in peers and socialising and being in her own little world.
Are these enough to secure a diagnosis in order to get her the help she will need when she starts reception..?

aliceinboots DS1 is almost identical to your description. We've seen the paed twice now, and so far only been told 'traits of ASD but not on the spectrum'. DS1 is 3.4 months and now at nursery. We've been told at this stage he will not get a statement, but SENCO has opened a file. We are now paying for a private SALT to go in once a week to help with his social skills mostly. I can't say the nursery (it's attached to a primary school) does anything extra exactly, but they have no additional resources to help. They are however very supportive about things more generally. We will have to wait and see what happens with Reception (thanks goodness DS1 is a September baby so we have an extra year). From what I understand it's getting harder and harder to get statements, and in our area unless you need 19 hours of 1-1 per week you're unlikely to get one.

I also understand the DSM-V (new global diagnositic criteria for all mental health matters) are to be published late this year or early next are changing a lot of things relating to ASD. For example, the Aspergers diagnosis is being removed and there's a new one called 'social communicaiton disorder' which is I think what our children may have. You could google DSM V and have a look.

It's really tricky and in cases like our where children do not meet the triad of impairments the whole watching and waiting strategy seems to go on for even longer. All I can say is diagnosis or no diagnosis the strategies for support are the same and get as much SALT as you can. It's made a huge difference to our son.

Best of luck.

"From what I understand it's getting harder and harder to get statements, and in our area unless you need 19 hours of 1-1 per week you're unlikely to get one".

If I had £1 for every time I had read on here "no chance of a statement" or words to that effect I'd be quite wealthy by now!.

I would try to find out for yourself this LEAs policy. Why 19 hours?. Blanket policies like the above are not actually permitted in law, they cannot dodge their statutory responsibilities in such a manner.

Never forget that you are your child's best - and only - advocate.

AttilaTheMeerkat this is what I was told by Portage. So far I've been we were 'unlikely' to get a statement by the paed, SALT and SN nursing team. None say you need a diagnosis of any kind to get support if a child clearly needs it however.

Incidentally, I think the 19 hours is a guideline not a blanket policy as they all used the words 'unlikely'. I can't find it written down anywhere.... but if it's not legal that might explain why.

Oo Attila, you beat me to it.

I was told similar about my ds, but the LEA have just started his Statutory Assessment. I was expecting a resounding no on my first application, but was wrong.

I think most people are told things like this at some point. I would always recommend applying anyway. You can never be sure of the motives of anyone who tries to tell you not to. Its always worth giving it your best shot.

My ds is actually achieving well at school, in top group for everything and I have lost count of the times I've been told by various people that the LA would refuse to carry out SA because he's not behind academically. I'm glad I ignored them and applied anyway.

Of course they could still refuse a statement, but we will cross that bridge and if necessary, fight that battle, when/if we come to it.

Sorry I'm very new at all this. My son (3.4) is epileptic and following an assessment by a neurologist/speech therapist and psychologist we have just been told he is on the spectrum.
He has no issues with routine at all btw- his issues are aside from the speech delay mainly sensory. Because of the way he's developing language they told us that he would need one on one supervision for his early years of schooling at least and see what would happen after that. Because of his epilepsy there might be permanent issues that we can't yet assess.

From what I gather does that mean that he will get the statement? We only saw them last week and havent received their full report yet. In the meantime we had been referred to our Early Years program and are waiting to get our Portage appt some time by the end of this months/early Feb.
And what does getting the statement actually entail?

I'm sorry to hijack the thread it just seems a bit hard to get basic information.

cjn, my DD is an unlucky late August born so will start school a couple of days after turning 4. Unless there is a dramatic and rapid acceleration in her overall development before September then I really do feel she's going to need one to one support. Does this come about through a Statement? Would a solid diagnosis guarantee a Statement?

We are due to see the paed early next month and I am really tempted to "crank up" her traits to secure a diagnosis.
There is no doubt she has a social communication and severe speech delay. Whether this is a "disorder" I really don't know but as she approaches 3.5 yrs it must surely be a very strong possibility.
Ok, some of the classic ASD traits are missing but the social and speech ones really are severe and surely are going to be extremely detrimental to her learning.

Oh I don't know. Anyone else veer daily, sometimes even hourly from thinking yes, they are definately on the spectrum to thinking maybe they're just a bit quirky and behind??

Alice, you have to factor in that the 'system' looks at your dd's needs from a different perspective. You want answers and help now but from their point of view, there is no immediate need to do anything until around school age when to suit their needs, a decision has to be made about which type of school and what level of support they will have to put in place. If she is starting school this August, you need to be in touch with the LEA Ed Psych now to talk through the options.

Hi

The best thing you can do is gen up on the SEN system and inform yourself as much as possible. Its a steep learning curve, but there's tonnes of help on the internet and anything you don't understand you can always come on here and ask.

The DirectGov website is a good source for learning about the basics of the system and how it should work. You can follow the links at the bottom of each page right from early identification of SENs through to the school system and ultimately statementing.

Another thing you should do is get hold of a copy of the SEN Code of Practice (SENCOP) and Disability and Equality Act as these will give you the back-up you need in terms of your and your dc's rights according to law.

I will try and explain it, but am far too wordy and will probably make it sound more complicated than it is. So feel free to ignore me and go straight to the websites.

Diagnosis does not guarantee a statement, but neither does the lack of a diagnosis automatically deny one. Basically there are three levels of SEN support in the educational system.

School Action (SA) is for children with an identified additional need and means the school is aware and in theory, is putting in additional support to help overcome any barriers to learning or achievement. The child should have and Individual Education Plan (IEP) that sets out individual, measurable and achieveable targets for the child and best practice is for this to be drawn up with the involvement of the schools SENCO (Special Educational Needs Coordinator), the teacher and the parents. This should be monitored against achievement of targets regularly - preferably half termly, but more usually termly and a new IEP drawn up each time. There is no legal requirement for schools to carry out the additional support a child needs on SA.

If, either the child has such SENs that additional school support is not going to be enough OR the child has been on School Action with little or no progress and further outside assistance needs to be sought then the they would move onto School Action Plus (SA +). This basically means that outside professionals are involved with the child. This could be a Paediatrician, SALT, OT, Educational Psychologist, SEN or ASD Inclusion Team, CAMHS or any other relevant professional. There is no legal requirement for schools to carry out the additional support a child needs on SA+.

If it is apparent that the child cannot make adequate progress or access learning effectively even with the help at School Action Plus, then either the school or Parent can apply for Statutory Assessment with a view to the Local Education Authority issuing a Statement of Special Educational Needs.

You do not however, have to wait for your child to go through SA and SA+ before applying. As long as there is sufficient evidence, be it from the reports of outside professionals or the school itself to suggest that your child will be unable to effectively access learning and make adequate progress without more support than the school can provide from its own SEN Budget, then you can apply. All you have to do is write a letter to your LEA stating that you feel your child needs more help than the school is able to offer and would like them to undertake a Statutory Assessment of his/her needs. They will then send you a pack with forms to fill in, asking for you to send them as much evidence as you can muster about why you feel your child needs a statement. They will also contact any professionals involved with your child and of course the school. They have 6 weeks from when you first write to them to let you know whether or not they are willing to carry out a Satutory Assessment.

The charity IPSEA is a good place to start and great for helping you through this process. Another good one is SOSSEN!

If they do carry out the Statutory Assessment, they will then do one of three things.

1. Agree your child needs a statement and draw one up for you to approve. It is vital that you make sure the statement is both specific and quantified - not just 'X needs additional support with Y' but 'X will have x amount of hours support with X from a suitably qualified person - which will include a, b, c'.

or

1. Agree that your child needs additional support, but state that the school is capable of providing it from their own budget and resources. If this is the case they may issue a 'Note in Lieu' stating this fact.

or

1. Simply turn you down, possibly stating that the child has sufficient support already.

You can appeal either a decision not to assess or a refusal to statement and there is the SEN and Disability Appeals Process to help you with this - but I won't go into all that now, as hopefully you'll never need it.

A statement isn't always necessary, if the child is well supported at school, happy and progressing and achieving well then in theory it shouldn't be required. The problem with this is that without a statement in place detailing exactly what additional support the child should be getting, then there is no legal requirement for the school to support them. It really depends on the individual school and their attitude and policies to SENs etc.

Hope this helps a bit. Its a lot to wade through I know, but once you get your head round it its not that complicated. I'm afraid my ds wasn't diagnosis early so I can't help with the process coming through portage and early years support - there are lots of other people on here who can though.

Thanks willow. We have a meeting next week (hopefully) with the Ed Pyschologist. I am panicking that September will be here in no time and DD will have to start formal education and there will be no support.
She currently attends the preschool attached to the primary and is coping without one to one assistance. As I said earlier, she does not have meltdowns, strict routines (or any routines!) or any sensory issues.
She is easygoing and happy. She just doesn't talk much (and when she does talk the words are very unclear) or show any interest in her peers.

As far as school is concerned she is very very easy to manage. I am worried that this in itself might result in her slipping through the net and being overlooked for additional help.
To be fair, the preschool staff are concerned about her and have started the ball rolling with the ed psych and SENCO so maybe I'm panicking unnecessarily at this point.

Thanks "moosemama*. That's my afternoon's reading sorted!

Alice, it sounds like your school are on to it and being proactive, which is great. I really wish ds1's school had been the same.

We were telling them there was a problem and despite agreeing that he had issues in certain areas they kept brushing us off. If I'd known then what I know now, I'd have been able to sort it out and get him help much, much sooner.

So, whilst I totally understand the panic, remember that its a huge plus that you're already on the ball, informing yourself and pushing for help and even better that the school are agreeing with you and keen to support your dd.

Don't forget, any questions - MNSN is your place.

moosemama thanks for that info too - very very useful and well written summary. Have read and saved a copy for future reference! Also inspired me to do further research and found loads of stuff from LEA about what does and doesn't qualify a child for a statement. Seems in Lewisham if you have a communication age that is half the chronologial age of what it should be you get a statement IYSWIM. So that'd suggest if a child is like our and has 'traits of autism, but isn't on the spectrum' with severe language delay we should be able to get the statement without a diagnosis.