Starting on the road to ASD / AS diagnosis

[nenevomito]

My 4yo DS has been referred to the Ed Psych in school and also for clinical assessment by the GP for possible ASD / Aspergers. I say possible as we're just at the start and nowhere near a dx yet, but that is what the GP is looking for.

When he was at Nursery, they would report him getting frustrated and angry and that they thought it would do better in school where it was more structured. He started school in Sept and by the end of the first term, they wanted to talk to us, not because he was being naughty or unpleasant, but they were worried about what would happen when he moved into Y1 where things were more structured as he was lovely, but struggled in the classroom environment.

They also explained that he was struggling socially - in that he was happy for other children to go and play next to him, but didn't seek out friendships and was alone. He has some imaginary school friends that he plays with and tells us about. School have said since that he plays with another boy, but if I ask DS if he has played with X he just looks blank and doesn't respond.

The school have been brilliant. First off for picking something up early and doing something about it, but also because while they have not mentioned ASD / AS themselves, they have alerted us to a lot of things that DS does that we are used to, so don't notice any more, but are not within "normal" ranges of behaviour for school. They are working with the EdPsych to sort out how to help him out best in school and gave us enough information to go to the GP. It's not all ASD assessments though, as school are also saying that in some areas DS is "intellectual" and they believe he is G&T in terms of language and creativity, so on top of having to suddenly learn about ASD, I'm having to learn about what the G&T support entails as well.

The GP was very to the point and said he thought it was more about where he was on the spectrum rather than whether he was on the spectrum or not and has been supportive, but the process for assessment as I am finding out, it going to be a long one.

This is turning into a long one - stay with me if you can!

The problem I have now is support for me. I tried talking to one friend and her response when I was trying to tell her about it was "oh well all children do that, its nothing". I couldn't get through that if I have 3 teachers, a SENCO an EdPsych and my GP saying that it is something, that I have to take notice. Also she said "well my DS does that, and he's OK" as if she wanted to reassure herself.

My other friend was very much saying "well you don't want him to have a label" and "aren't you worried about labelling him so young" and "it all sounds like an overreaction to me." When I tried to explain that I just wanted to make sure that if he does have aspergers or ASD he gets all of the support he needs she said "well I wouldn't want my child to be labelled like that". At that point I wanted to hit her and say "Oh and you think I do?" Of course I would rather we weren't going down this route, but what am I meant to do? Say, thank you school and GP, but I am going to ignore your advice as I don't want my child to be labelled. Surely getting him the right support is more important?

My parents know, but Mum thinks that its poor teaching?!? at the school and Dad thinks that its just because he's young. Both think I am doing the wrong thing having him assessed because (and get this) "It will be on his record forever". What is that meant to mean.

Where this leaves me is with all of the worries and upset and concern that any parent has when they are told there is a problem with their child, but friends and family that I have just given up even trying to talk to. So I am here. On the internet. Telling Strangers, who if they have got to the end of this post deserve a medal.

Thanks for reading.

Ellen - DS also flaps his hands when excited or under pressure (e.g. All the way through a celebration assembly when they had to stand up and sing something) Is that actually a sign??

Obsessions - he has a thing for sticks. Sticks! Our garden is full of bloody sticks he has "rescued" from the sodding park. He used to try and take them to bed with him, but we did manage to put a stop to that one.

He also gets distraught if you throw any of his "stuff" out or even suggest you could get rid of his stuff - even if its complete junk. We have to take it away subtly when he's not watching and generally keep it to one side in case he goes into a major hunt for it and it needs to be returned.

It is very very unlikely to be bad parenting. Noises are just one thing, certainly not all DC with ASD make them, but some do. Also DC who do not have ASD may make noises. Anything you mention on its own any child may do, it's when you start to get quite a collection of things that alarm bells start ringing. You are doing the right thing, getting him assessed. Never think you are not. If he has problems the sooner he and you get some support and help the better.

'Tis because of the different brain wiring.

Most people's brains have a superfast 'people centre', in the bit behind the ear. It recognises who we love and how much we want to protect them etc.
In us, our brains use that bit for storing info on our things instead. So to us, our things are as precious as your baby/child is to you, and if people move them or break them it feels the same as if you turned up to find someone injuring your baby. Respecting our stuff is hugely important.

We get round the people-caring problem by rewiring our brains. Takes ages, but it works in the end if we're given enough social skills training and enough time to get it to do it. Never as good as the real thing, because the wiring is a bit dodgy, but we can do it.

Crossing again, sorry. Yes, I'm afraid flapping is another box ticked. But, as I said, I can't DX, I can only compare with what I know about my DS and his friends etc. Only a specialised developmental Paed can truly DX and they won't do it instantly. The more obvious it is, the quicker the DX. If it's not so obvious it may take much longer. My DS was a classic case, apparently, and the Paed told me at the first meeting that she thought if could be ASD. It took 6 months for her to make the DX, though.

Not all children who have ASD have tics or noises, being a spectrum disorder it can present in different ways with different children. Some children with AS can do eye contact, some can't. What the professionals will be looking at is whether or not he has traits in all three of the areas in the 'triad of impairments'.

My ds has a throad clearing noise - highly annoying, but then I did this as a child and as far as I know, I don't have AS. He also has a quiet hum. His facial tic is a kind of exaggerated blink. He doesn't do it all the time though, it tends to resurface when he's stressed, upset or over-tired.

I knew in my heart that ds was going to get a dx, but I still spent the day before his assessment convincing myself they would tell us to go away and stop wasting their time. By that time I desperately wanted him to get a dx so we could get him all the help and support he needs at school.

One thing I do know however is that whatever it is - and it would be wrong of any of us to say its AS based on the little information we have over the internet - it is most definitely not down to bad parenting. You sound like a super Mum and you are already doing the right thing by him by getting him assessed. The assessment process can take a long time, but is not at all upsetting or stressful to the children, they just have a chat with some nice doctors, do a few puzzles and/or play a few games and then go home again. Its a win, win really. If he does have AS and gets a dx you can make sure he has all the support he needs, likewise with the G&T thing. If he doesn't, regardless of dx, the school sound like they are absolutely on board with helping him, so he will still be well supported through his education.

It is very confusing and a very steep learning curve, but you're doing fine. Don't try and do/read and understand everything at once, allow yourself time to process what's going on.

Also, although my DS is very autistic, he is also high functioning, in MS school, doing averagely well academically. (No Einstein, Isaac Newton or Bill Gates here, although they all are suspiciously autistic.) He is lovely and funny and naughty and delightful. (And evil and wicked and annoying!) So although he was DX really quickly it didn't mean he couldn't achieve in life.

There was no speech delay with your DS, was there? I assume not from what you've said.

No speech problems - that the one area there are really no concerns as he was talking early and now doesn't shut up.

I know no one here can offer a dx , but its very helpful to hear from mums with this experience to help understand better - I'll take a look at that triad of impairments.

Amberlight - its very interesting what you say about how you feel about your things. I will keep that in mind when dealing with DS. He still talks about toys that went away a couple of years ago

It looks like you will be better off looking at Aspergers Syndrome AS rather than other ASD as your DS had no language delay. Though to be honest, the only difference between DXing AS and HF ASD is the speech delay. All children on the big, wide spectrum are different but the diagnostic criteria does include that AS can only be DXed if there was no speech delay. Obviously, for some adults who get a DX they don't know if their speech was delayed, so they get an AS DX when they could just as easily have had a HF ASD one.

I, personally, don't believe it matters much, but if your DS is a good talker, G & T etc, if he does get a DX of anything on the spectrum, it's going to be pretty high functioning.

They are doing away with the distinction between HFA and AS soon though and all dx will simply say ASD. I had them amend ds's dx to say Aspergers Syndrome/ASD because then I can pick and choose who I tell what. Some people tend to thing that AS is not really autism, which can be an issue when fighting for support in school.

Ds1 was also an early talker, but then all three of mine have been and only ds1 is on the spectrum. Ds2 and dd's early speech was different though (something we hadn't realised until we were going through assessment with him). Ds1 could name almost any item you showed him and ask for what he wanted etc, but the other two actually wanted to chat and engage with you far more. He also made up his own words for things he didn't know the name of, as if he knew that they should have a name, so in the absence of their real name he would give them one of his own. These names (telephone was a 'dordor') were used consistently for quite some time, despite him being able to speak properly.

My ds collects sticks and stones. His school trouser pockets are forever full of them, but then so do the other boys in his class. The difference is that my ds wants to keep every single one and has a box just to keep them all in.

He also walks up and down the room incessantly in a sort of figure of eight type movement which can be highly annoying, but he doesn't even realise he's doing it.

We have had threads on here before about how many of the children with ASD can't bear to part with their belongings. Many of us have apparently got lofts bulging with old toys, clothes and even furniture. We do the same as you, pick our moment to remove it when he's not around, store it for a while in case he notices and gets distressed, then gradually get rid of it.

We have been trying to get him a better desk for his pc, even went and chose one with him that he really liked, but he simply cannot part with his old one so the new one has been flatpacked under his bed for months. We've told him we will put it in the loft (its actually a 1950s solid wood one with dovetail joints though, so not as if we can actually dismantle and store it). Once he's told things are in the loft he's usually ok with it, as long as he thinks they are still in the house somewhere. We try every christmas and birthday to get him to give something up for charity - ds2 usually comes up with a box of stuff to go, ds1 manages something like one small plastic piece of tat and even that's a trauma. We still try though.

hand flapping and attachment to unusual things are also pretty common ASD traits, but again you come back to traits not being things that no-one else does, lol

My Ds has a diagnosis of AS, he was nearly 7 before I realised it was a possibility - I thought I knew what autism was (I had had some experience with what I now know to be classical low functioning autism) he's bright and sociable (in his own way), just well, eccentric, lol, and he was my eldest so I had no real comparison... it happens all the time that parents don't notice until children get older, DS wasn't that unusual as a small child - it's just that he didn't grow out of some things that are completely not out of the ordinary when they're 3 and are by the time they're 6

I remember very well half hoping that he'd be diagnosed because that would explain why he was doing certain things and half hoping that they'd tell me to go away and he was 'normal' - but the thing is, having a diagnosis doesn't change who he is at all

normal's overrated anyway, who wants to be average? lol

School's been a struggle at times, a massive one - but the diagnosis itself has helped him massively, he knows he has AS and is actually quite proud of it, he likes being wired differently from other teenagers, he thinks they're silly and waste loads of time doing pointless things, lol

He knows why he's different, he knows why he struggles with certain things, but it's also made him aware of his strengths too and he doesn't think he's broken or faulty - just that his brain works a bit differently

He's read up on it and spoken to other people with AS and he likes the certainty of having a definite label, before he got his diagnosis (it took a long time) he was struggling massively with self-esteem issues, now he's happy knowing the reason even though he's exactly the same, lol

He's not your average teenager and yes it does cause him difficulties, but he's a fantastic wee person (ok he's taller than me now, but he's my wee person, lol)

and whether your DS is sent home because he's not on the autistic spectrum or diagnosed with an ASD I'm sure he's fantastic too

Argh! MN has deleted an entire post because I mentioned DS's name, instead of just taking his name out. Darn. That took me ages to write this morning. I wish I'd saved a copy.

Hi babyheave

I always see a diagnosis as a signpost to getting him more help. You are your son's best - and only - advocate here. No-one is better placed than you to fight his corner for him. This is also because no-one else will.

You need to think longer term as well here with regards to his additional educational needs.

I would seriously consider applying for a Statement asap for your son as he could well need the support a Statement would give him in school. Many children on the autistic spectrum can find school bloody hard going socially as well (these places have so many unwritten social cues that are not picked up on).

Has anyone mentioned the word Statement to you?.

I know about statements in a "I've heard about them" kind of way. I'm meeting with the EP on Wed next week to talk about him, so I can ask then. (see how the acronyms are just tripping off the old tounge now.)

I know it sets out what his needs are. What do they actually do though? Is it different to an IEP or does it go hand in hand?

In theory, all children on the Special Educational Needs Register should have an IEP. The majority of children will be on School Action, a smaller number on School Action Plus and a few will be statemented.

A Statement of Special Education Needs, is a legally enforceable document drawn up by the LEA, which sets out the childs additional needs and what support should be put in place to support them and help them develop and achieve. With a statement you have redress against the school if they don't provide the specified amount of support.

To get a statement either you or the school have to apply to the LEA for Statutory Assessment. The LEA have a set length of time to respond with their decision as to whether they are going to assess you child's needs and then, if they agree to assess, an additional number of weeks in which to carry out the assessment. Once the assessment has been done they have another finite amount of time to produce a draft statement for you to approve, or request is amended, before a final statement is produced. The minimum length of time it takes to get a statement, if everything goes perfectly to plan and the LEA don't refuse to assess or mess you about with the contents of the statement is 6 months, sadly in most cases, it takes a lot longer than this.

IEPs are internal documents that set out targets for the child, how the school intends to help them meet those targets and how they will measure whether or not the targets have been met. They should be drawn up by the SENCO and teacher in consultation with the parent/s and if possible any other professionals involved with the child. They should then be reviewed at least once a term by the same individuals. Older children are sometimes included in the planning and reviewing of their targets.

You may find IEPs referred to on here as Individual Empty Promises. This is because in many (not all) cases they aren't worth the paper their written on and the child never sees any of the support. IEPs are not legally enforceable.

Babyheave,

Would have to agree with every word that Moosemama has written.

My son has both a Statement and an IEP and I certainly know which one has helped him more in the long run. BTW I returned the last IEP unsigned back to the school because it was inaccurate and I told them as much as well.

Do let us know what the EP says when you meet upon Wednesday. Bear in mind that this person is in the employ of the LEA and may also try and dissuade you from applying for a statement on the spurious grounds that "child is not severe enough to warrant a statement", "he does not need a statement" or "there are other children worse than him who don't have statements". All designed by the way to put you off from applying ao ignore such naysayers. That is also why you are your child's best - and only - advocate here.

The only criteria for a statement is need, do not forget this.

Before I reply to you, lovely Mumsnet have sent me the post that I withdrew so I could edit my DS's name out and re-post it here. I think I am going to use this thread to help me work through what is going on, so it will be good to keep it all in one place.

Withdrawn (now Edited) Post
Thanks everyone for replying. Its been good to talk about it somewhere More waffling from me, I'm afraid as it's really helping me to put down somewhere what is actually going on in my head.

I've been thinking a lot about DS's behaviour as there is a lot I thought was just normal kids behaviour, so now I am not sure what is an indicator for ASD and what isn't. Just to explain why - I relocated when DS was 18 months old, so had no friends with children the same age as I left all of my friends behind and as I was working full time, I didn't make any new ones, so have no one to compare him against.

He was at nursery two days a week and looked after by my parents for 3 days a week. To be fair to my parents I suspect this is why they are so defensive because if something was wrong, surely they would have noticed it IYSWIM (I've heard that a lot recently "well he was OK with us, so it must be school / his age / something else.) What I think is more likely is that they just got used to him being like he is and accepted what he did as normal.

When Nursery talked to us about him getting angry and frustrated or about how if his friend wasn't at nursery, he would just sit on the wall and how he would just ignore everyone unless it was something he was interested in, and a few other things; well, to be honest we just thought the nursery was a bit crap so took no notice. DS still talks now about missing nursery. I think it was easier for him there just to get on with being him.

Anyway, the things that he does that I am now beginning to understand are indicators for ASD are as follows: (These are similar to what school put on his ed psych referral form as well).

1. He make noises.

He makes them when he eats - "yumammmammmayummmammamma" next mouthful - "yummmummummmmummmmmum" next mouthful - until finished. He makes them when bouncing up and down on the sofa on his bum. He makes them when bouncing around on his trampoline. There is one particular noise - and please note that I am absolutely dying inside when I think about - which is a kind of nasal. Nnnuh nunnnnuh nunnnuh, which DH always said "I hate that noise it makes him sound like there's something wrong with him" and we'd tell him off for making it as it made him sound daft. and now we know that actually there is a reason why he makes these noises and we were telling him off and saying something mean. And I actually feel like a complete shit about that. That noise is reserved for doing this kind of run/jog/skip thing he does from one end of the house to the other. OR sometimes just when you are trying to get his coat on him to get him out of the house or some other day to day thing. I remember telling DH once when he was saying that he wished DS would stop making noises as it made him sound like he wasn't right and me telling him that it was normal as every kid does it. They don't do they though. URGH.

1. Its not always easy to get his attention.

I can be right in front of him going "DS, DS" and he will just be staring into space and it can sometimes take a minute or so even with me waving my hand in front of his face for him to break out of wherever he is inside his head. Sometimes this is combined with the shaking of head from side to side and the nunnnnuh noise. You have to say, "DS, DS, Look at me" and sometimes even guide his face so he's looking at me before he will actually look into my eyes.

1. He gets obsessive about stuff.

We have had full blown screaming tantrums because he hasn't finished filling up all of his water bottles with bath water before we got him out of the bath. We've had similar tantrums about not being allowed to watch the same sodding DVD for the second or third or fourth time in a day. There are more, but it gets wearing.

Those are the first three and I am going to have to stop here and go and do some work. Also because if anyone as read this epic post. I suspect you need a comfort break.

Reading this you could wonder why it took school pointing these things out for me to become aware of them or suspect there was a problem. The main reason is that he doesn't do these things ALL the time and there is a lot of times where he is just behaving like any other kid.

Attilla and Moose - I suppose in my rose tinted world I just expected that if DS has a problem then they would put in place what he needed. I guess I'm not that surprised that isn't the case. I will definitely keep in mind the difference between an IEP and a statement and if they suggest the former, I'll push for the latter.

If I have it right, DS must be on School Action Plus if they've involved the EP. I know in my intial meetings with them they explained that the things they'd done in class to help him hadn't been working, so they involved the SENCO, who then brought me in for a meeting and for my agreement for the EP service to be involved.

Anyway, I really ought to be doing housework right now as the place is a tip. I need to tidy DS's bedroom and clear out the sticks that he's snuck in when no one was looking.

Thanks for all of your help BTW, its really helping.

Hi babyheave,

If he is on SA plus he should have an IEP anyway and this should be reviewed termly with both his nursery teacher, SENCO and your good self.

Re your comment:-
"I suppose in my rose tinted world I just expected that if DS has a problem then they would put in place what he needed"
To paraphrase Blackadder here, "I'm afraid not". You will have to continue to be firm and demanding with school. As I have previously mentioned you are his best - AND ONLY - advocate here. You truly are.

Ignore any naysayers who basically tell you not to bother applying for a Statement if they say this to you (which they likely will so forewarned is forearmed) and make the application yourself to the Chief Education Officer of your Local Education Authority. You will need to give them six weeks to reply (mark that date on your calendar). IPSEA's website is very good as well www.ipsea.org.uk and has model letters you can use

This may all seem a bit much on top of everything else but an eventually well written Statement is very valuable. It give your DS more hours in terms of support in school and will make school sit up and take proper notice of his additional needs (it is a legally binding document). They may not otherwise and you may have to fight for scant resources all the time.

Do keep us posted as to developments.

He definitely doesn't have an IEP yet - well if he does then I've not seen it. I'll bring it up at the meeting on Wed and I'll brief DH as well so he knows what I'm on about.

Hi babyheave, i've been reading all of the excellent advice on this thread with interest, since I suspect we're a few months further down the line from you, but basically at the start of a similar journey!

Ds1 has just turned 5 and, whilst nobody at school or preschool raised concerns, we strongly suspect that he fits the profile for AS, and exhibits many behaviours that the wise parents of older children on this thread have described. (Btw the noises are the WOrST bit for me as well - for us it's incessant phonics-based sustitutions - hello, bello, kello, dello etc ad infinitum) Anyway, don't want to hijack your thread- just thought I'd share our experience of the assessment process so far.

It took about 3 months after seeing my GP for the paediatrician appointment to come through. This initial meeting basically consisted of dh and I listing all of our concerns in a semi-structured interview. Most of the behaviours the paed mentioned rang bells to some extent. She had a brief chat with ds, and gave him a basic physical examination - I think his co-ordination isn't great, especially when tired, and she suggested he may be hypermobile. She's referred him on for OT and SLT assesments (like your ds, no speech delay but several 'peculiarities' in his intonation and mode of expression)

A month or so after that, the paediatrician went to observe him in school for a morning. We haven't heard anything back from that yet, but have a follow-up appointment on May, when I suppose we'll discuss her observations and decide whether to push ahead with the full ADOS diagnosic assessment. Meanwhile, we have 3 copies of a detailed questionnaire to complete- one for us, one for grandparents, other for hod teacher. It consist of lots of qualitative type questions, eg 'describe an occasion when your child has engaged in a repetitive or routine-based behaviour'

So that's where we are. I'd be very interested to stay in touch babyheave, as I don't know anyone in RL who's been through this long and daunting process. We have also met with lots of "there's absolutely nothing wrong with him!" comments from well-meaning friends, and the gps are very concerned about a label impeding him when he's clearly bright academically (but not socially!) I know they're trying to comfort, but you know your child best, and deep down I've long suspected that my ds is a bit different (counting to 100 in German aged 2 1/2 was an early signpost!) and I want to do everything in my power to help him through that hurdle of settling into juniors that several other posters have described.

Best of luck to you, and I'm sure you've made the right decision in geting the assessment process underway.

Apologies for the typos- fat fingers on phone!

That post was meant to be about the assessment process, not all about my ds, apols

Hi woofie thanks for posting and sharing what is going on with you and your DS with me - I'd be glad to be in touch with someone going down the same path as we are.

I do worry about the questionnaire part as I'm torn with not wanting to overplay what DS does but also wanting to be accurate. As the gps don't think there is anything wrong, I can't see them answering it. I'm also not sure about how DH feels about all of this. When it all started, his attitude was that it wouldn't surprise him if he was somewhere on the spectrum and also that it would explain things. Since it has become more 'real' as in meetings and referrals, he seems to be wavering back to there not being a problem. e.g. Today he came out with "You've seen that ad when the child runs in and bounces on the sofa making noises, well that shows that all children do it." This was while our DS was skip/jogging up and down the room going nuhernn nuhernn nuhernn.

The problem is that when he starts wavering, I start to worry that I'm reading too much into it as well and then I am back onto the whole "well school wouldn't refer if they didn't think there was a problem" and so on and so on. I need him not to waver like this. I don't want it to just be my problem or me doing this.

Waffling again.

Whatever the outcome, I'm just doing my best. I've bought the Tony Attwood book for my Kindle and have been educating myself a bit more. I'm just a bit on edge now until Wed.

p.s. if you want to talk about your DS on this thread as well, feel free. I'm finding that talking here is very helpful, so join in if you want.