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.

LittleMissGreen - thank you. Its good to know that in the middle of all of the support I'm getting that I've been of help, especially in what was a very ranty, sweary post.

I'm not talking to my mum about it either, but if (when) he gets a diagnosis I know I will find it hard to tell her too. I'll have to remember my own advice.

night all

Coff33pot. I am definitely grieving too. Sucks doesn't it.

((hugs))

you didn't see that, right!

I don't know if it helps at all, but I'm not grieving...not anymore, I did for a long time. But now the child I have is pretty amazing, he's not always easy to live with and he's not the one I thought he was going to be, but he is great.

I'd describe it more as, well, god this is going to sound wanky... Lol, but it's like I was ripped open and for ages it hurt so much, and it never quite heals up and there's a scar but it doesn't usually hurt, just if something bangs it.

Hmm I've rewritten that about three times and I can't make it sound any less twee, rofl.

I wish he didn't have AS because it makes life harder for him, but I don't know the boy he would have been, I never knew him, I only thought I did and I can't see how he could be any better than the one I have.

Even if he does make me drive him to the warhammer shop, insist on telling me about all the bits and tell me how I should be driving while on the way :| lol

it does get better, honestly, things upset you on the way - but nothings ever as bad as where you are now, when it's all still raw and new and you're trying to get your head round it

"Atilla - The EP did mention a statement, but only in terms of how there are plans afoot to remove the LEA responsibility. I am listening to the good advice on here about asking for a referral myself, but I've still not got my backside into gear. It needs me to move my head a bit further on to accepting this is happening. I'm getting there".

Well I hope you get there sooner rather than later. Time is of the essense here.

To paraphrase your good self the EP here is being a twatbadger who is trying to doidge his responsibility. This nospeak is towing the LEA party line; he is under pressure by the LEA not to readily statement children, children who really need statements. You will come to learn to ignore such naysayers.

The law re statements is still in place and statements are still being issued, if changes do take place these will not happen for several years yet.

Tabulahrasa explains it very well actually. Am myself hard nosed to it all now and this whole process of grieving is very real. You do come to a sort of acceptance and understanding eventually. I still bear some emotional scars though, most of DS's reception year was particularly difficult and I dreaded pick up time. It was only some months post his statement being issued that another parent within his class came up to me in the playground and said that she and the others were very sorry that I got put through all that crap. It meant a lot, still does actually.

Babyheave I am worried.

This school has actually done the things they should do in trying to get help for your boy. In my humble opinion, that is rare. Very rare. My guess is that you have some real help available that most of us would have given our eye teeth for - and in many cases, still would. Teachers are human and easy to offend. If you want that statement, you will need their help. While you are feeling raw, please try not to damage any of them, and please try to avoid getting to a 'them and us' mentality. It will work against your child and mess you up. Keep thinking to yourself that these people are your helpers in getting what your child needs.

I asked who was the rellevant person in Parent and Pupil support at the school, found his email address and asked him to statement my youngest. I had the docs reccomendation and the schools refusal, but still got the statement with a minimal of fuss and have used it to fend off a major problem very recently. Itsreally worth having.

Friends....They dont know what they should or shouldnt say. Most are ignorant and fill in the gaps in a conversation with whatever comes to mind. I am pretty sure that none of them would deliberately kick you, but when they hear something they dont understand, they just thoughtlessly react.

I know it might sound callous, but you will need friends to offload to, and also the thoughtless ones will say the things other people will be thinking but havent the balls to say. Have you thought to use them as a testbed to find answers and explainations they can understand for the things they say? Once you have this worked out, it all just flows by.

Weird? My kid came home upset because the other kids stopped calling him fruitloop and started calling him weird. I told him that was brilliant! Now hes just like the rest of us because Im weird, big brothers weird, mothers weird and so is the dog. He now thanks people who tell him hes weird.

Hope you start feeling better soon.

Hi all. I've not posted for a while mainly due to the easter hols, but also because I've been spending time trying to get my head around everything. I now have the EP report and tomorrow DS is back in school with a note asking for an appointment to speak to the SENCO to discuss working with them to get DS statemented. While I know I could have already done this, I've decided to work with the school as they have been so good so far. The plan is to speak to them about the report and then say I want him statemented. If they agree to work with me then we will do it together, if not I'll go it alone.

So on to the report. I'll write what it says as its still doesn't make much sense to me, but maybe it will to you, so if you know what it actually means please help. :(

"The social interaction deviance composite (SIDC) for xxx is -27. SIDC scores of -15 or below can be an indicator of social communication difficulties,"

So is -27 bad? Its 13 below -15, so its definitely an indicator, but what does it mean?

"xxx has a general communication composite (GCC) of 79 at the 45th percentile which is within average range. However responses suggest a variable communication profile with social relations at the 1st percentile and semantics at the 95th percentile."

So basially his score is average, but its not because he scored average, but wildly at the two ends of the scale. Again, I have no sodding clue as to what it actually means.

"xxx's BAS II cluster scores present an uneven profile with significant strengths in pictoral reasoning but relative difficulties with spatial skills"

Again WTF?

"xxx presents as an able and talented child with significant strengths in non verbal reasoning and vocabulary, relative difficulties in spatial skills and considerable difficulties with social communication and interaction."

Well is able and talented different to gifted and talented? What is realtive difficulties.

I know that being on the 1st percentile aint good :(

Anyhoo, lets have some good stuff from the BAS II, as goddamit I need it.

DS is 4.10

Picture similarities - 99th percentile 8+ years
Naming vocabulary - 97th percentile 8+ years
Number concepts - 88th percentile 6 + years

The rest of it he was about what you would expect.

God I hate this :(

Also, we went on holiday and for the first time ever we got looks and comments about his behaviour. His tics are getting quite bad and I just wanted to stomp on their toes.

I know, I know. If i saw a child making strange noises and rocking his head about as he eats and flapping his hands about I'd look too, but still...

The problem is that what no one paid any attention to when he was 2 & 3 as it was just toddler behavior stands out at 4 and older. Bum.

Hiya Babyheave. Nice to see you back.

That's an interesting report. I've not come across SIDC, but social communication difficulties are a pretty key part of an ASD diagnosis. One of the triad of impairments.

That 'spiky' profile of mixtures of high and low centiles is also fairly typical of ASD, low social relations is typical, and high semantics is the meaning of words. Semantic pragmatic disorder is a language disorder probably on the autistic spectrum where DC have trouble with how to use language socially despite good knowledge of concrete meanings of words. Link here

Good non verbal reasoning means that his basic intelligence is good if you take language out of the equation. Good news! Poor spatial skills is common in dyspraxia.

Picture similarities, number concepts and naming vocabulary all really high, again, taking abstract language out of the equation, he's a bright spark! My DS2 got similar scores. Naming vocab means he can name pictures of lighthouses and maybe stethoscopes or something, but they are concrete items so appeal to his talents. No abstract concepts required or imagination.

The EP can't DX (neither can I!) but the profile is very similar to my DS at the same age, some very high %iles and some low, pointing to a basically bright lad with ASD type deficits or semantic pragmatic etc.

You'll eventually get the rhino hide that we all have to develop. Take hope from the fact you can be proud of your DS's abilities. He really is special, never average!

Hi Ellen. Thanks for that. I'd not heard of the SIDC either, but I'm guessing that 0 is the norm, but how bad -27 is, is going to depend on where the scale runs to as if it goes to -100, its not so bad, but if it stops at -30 It's dreadful. Since he's in the 1st percentile for social relations on the CCC2, I suspect -27 is bad.

The past few weeks has been the first time I've spent a significant amount of time with DS since this kicked off and I just got so frustrated the first week as I was noticing everything that he was doing and I was having to remind myself just to enjoy his company rather than examine the minutiae of all his behaviour to see whether it was an indicator or not.

The EP called my phone at 5.35pm on the Thurs before Easter and I missed the call as I was driving home. They said to call if I had any questions about the report, but of course by the time I got home the office was shut and when I called in on the Tues after Easter, I was told that they were on holiday for 2 weeks. GRRRRR.

We went away after that and came home to the report. I misread it the first time around and did a little dance when it said he was within average range on the CCC2 and I didn't read the - before the 15 and 27, so it read to me that anything below 15 was bad, and he was 27, which was good. When DH pointed it out to me later, it was a bit of a come down.

The holiday was great except that he got over excited and over tired, which made everything worse. He was flapping about everywhere and making his mmmmm noises and DH was getting quite stressed about people watching us, especially when we were eating out as he was really loud and nodded his head from side to side with each mouthful. DH tried telling him to stop but of course that didn't work. However I have found that stroking the back of his neck when he starts nodding his head about when eating stops it, so I sat next to him.

It was all a bit sad though to see the other kids playing with each other and DS in a world of his own. I felt like I had to excuse him, but then wondered why the hell should I? No other parent is excusing their child for being themselves, so if its not hurting anyone, I don't see why I should either. It does make me worry if he's going to end up being bullied though as it becomes more obvious that he is different. We also had to retreat back to the room early a few times as he just needed to be alone. Hooray for portable DVD players.

This has turned into an Epic again. Apologies.

Babyheave

Nice to see you back, was wondering how you were getting on.

Would suggest to you that if school now makes any noises about waiting/seeing or start umming and arring over such a report, make the statement application yourself.

I would seriously consider making such an application yourself anyway because you know its been done then. Some schools can take ages before deciding to send off such a thing to the LEA in question. That just causes more delay.

Good luck with the school, keep us posted.

Hi Atilla I've printed off the letter to ask for an assessment and its all ready to go, but will talk to them first.

I've just had a bit of a break from thinking about things, I suppose, but now we've got the report its back onto the treadmill.

Well I have to give top marks to the school again. One day back and they have already been in touch to arrange a meeting to discuss the next steps following the EP report. I'm in early next week. DH has also managed to get the time off. Now things are moving along, he's been really supportive about it.

The GPs are still convinced that its the school's fault/ my poor parenting, but at least now I have DH on side, its a bit easier.

Babyheave,

I sincerely hope the school do not let you down re this forthcoming meeting. Never forget that you as his parents are his best - and only - advocates here.

Do not accept anything less than being told that a Statement for your DS is needed here. If they umm and arr at all about statements make the request yourself personally to the LEA. If they apply for it pin them down to a specific date; you need to know when school apply for it.

If GPs on the paternal side are like this then I would ask DH to have a quiet word with them. Also they can have the luxuries of time and denial and denial is a powerful force ASD is nothing to do with poor parenting or lack of school support.

Attilla - its my parents who have those opinions, sadly, but I think they are just in denial themselves.

DH's mum has always insisted that DS takes after their side of the family (looks, ability) and bares no resemblance to me and my family at all. From her point of view I am just an overweight heir-carrier. (Lovely lady, much nicer since she moved a couple of hundred miles away.) DH hasn't told her about this now. Part of me wants to breezily say to her "So you were right about him getting everything from your side of the family" when DH finally brings it up.

I am feeling hopeful with the school. The fact that they've set something up straight away says that they want to act in his best interests. I'll be taking the letter I want to send to the LEA with me to the meeting and asking for them to back it up. :)

Thank God for Mumsnet, is all I can say. I wouldn't be any way near as well prepared and informed without the advice from here.

To be fair, my parents have always insisted that DS gets everything from our side as well. There is tumbleweed rolling across the ground with anyone wanting to accept that it may be genetic from the family over this issue though!

That meeting sounds positive. Make sure, at Attila says, you get what you want from it. Ask if it would be better for you to request statutory assessment or the school. Go in with a written list of your requirements if you can. Otherwise it's too easy to forget the important stuff. You sound pretty positive, yourself, or is that your Mumsnet persona? Hugs and here if and when you need them.

I sort of feel sorry for the GPs. It takes so much longer for them to come to terms with these things, especially if they don't see them everyday. They are going through that horrible uncertain time when they just want to deny there's a problem. It's no good to you, though. If you tell them you just need their support at the moment, can they leave their doubts at home, will that work? Acknowledge that they have doubts but get them some reading material to help them understand? May be completely impractical for your parents, of course.

I don't know about positive, but I have my practical head on and when I have something tangible to work from (the EP report) and can do practical things, like meet with the school etc I am OK. Its still a roller coaster.

Within the last week, for example, I've been happy to the point of laughter when I misread the report, to being furious with the EP for being on holiday when I wanted to talk to them to being in tears about DS hiding in his tent when friends came over to being almost hysterical to my DH wondering if DS has ASD because I got drunk on a girls night before I knew I was pregnant. I've then moved back into reading around the subject of Aspergers and ASD, arranging meetings and printing off letters and being calm and positive.

When it comes to the school, I want to go prepared, but to be honest, I'm not sure what my requirements are. I know I want them to do something, but other than the assessment, I don't know what that something is. Any ideas? I know I'm going to want to meet regularly to check on progress and want to work out how they are going to manage his move from the relatively relaxed environment of year R to 1, but as for the rest, goodness knows.

Thanks for the .

Hi Babyheave,

re your comment:-
"When it comes to the school, I want to go prepared, but to be honest, I'm not sure what my requirements are. I know I want them to do something, but other than the assessment, I don't know what that something is. Any ideas? I know I'm going to want to meet regularly to check on progress and want to work out how they are going to manage his move from the relatively relaxed environment of year R to 1, but as for the rest, goodness knows".

You're moving on the right lines here.

I would just ask them to make the statement application and if they umm and arr about it in any way, shape or form (you will hear it from their words and tone of vocal response) then make it yourself. You do not want them to sit on any such application seeing as it takes around 6 months (and longer on occasion) to get such a thing set up anyway. The requirement ultimately is to get the best educational support possible for your son and that will entail a Statement that is both specified and quantified (as laid down in case law; some LEAs do try and dodge their statutory responsibilities here). A well written statement that is obtained early in educational life can do a power of good for both DS and you.

I agree it is a good idea to meet with the school but if DS is on an IEP (Individual Education Plan otherwise known on here as Individual Empty Promise) the school should meet termly with you anyway to go through this with a fine toothcomb. Is there an IEP already in place?. They should also be prepared now and preparing for his move from reception to year 1 (seeing his new classroom would be a start). I would also be very interested to know how they will manage this as Y1 is a different ball game (so is Y2 to Y3 in Juniors but that is further ahead. If you have a statement by then it will be rewritten to reflect the changing school.

Sorry to read that it is your parents who are in denial. Hopefully they will come around given time. I would give them material from the NAS to read.

Right, back to this thread. I'm hoping that at the end of all this I can print it out and remind myself what a journey this has been.

So after absolutely losing it on Saturday after the "3 months just to get a letter telling me the waiting list several months long" debacle, today was the day of the school meeting and thank god I appear to be at a bloody good school as it was positive.

First off they want to get DS a statement but are concerned that if they just go in with their concerns and the EP report it will get knocked back. Because of this they're referring him to the SALT for them to assess and write a report as well as arrange for him to join some groups to help with communication and they have given me the name of a local child development paediatrician who has worked with them before and asked if I would go back to my GP and get him referred to them and to an OT. I explained that I am waiting for an appointment, but the paediatrician they are recommending is at a different centre.

They said that if they can get at least the SALT report they can go and make a case for a statement that will be more successful than if they go in now.

Funding to the assesment centre has been cut, hence the several month long waiting list and our LEA has also stopped the 'interim' programme that they had for pupils who were between school action plus (where DS is now) but were likely to get a statement, so they are limited to what they are going to do in school. However they have put him onto their SEN register and I have his IEP and write up of what they are intending to do. Here goes.

1. They've set up DS with his own workstation with things that they know he likes in and a visual timetable. He can use this space when he wants to "be him" but also if he is struggling in group work so he has somewhere to go with the TA or by himself.
2. He is being taken out of class 2 x per week with a specialist SEN TA, one for a socialisation and communication group - firstly one to one and then with other peers and secondly for spatial awareness 1-2-1 i.e. using PE equipment and the like.
3. They are going to use the Write from the Start programme as recommended and also the sensory seat and also do some "tactile writing" with him using things like foam and chalk.
4. They are going to prepare some differentiated work for him which allows him to work at his level in the areas where he was scoring 6+ and 8+ on the ability scales.
5. They are going to do some familiarisation work with him to prepare him for moving into the next class. The next teacher in line to get him is up to date with where he is.

I don't know about you lot, but I was a) pleased and b) amazed that they are putting all of this in place.

So now I am just waiting for information about the SALT referral and for my GP appointment next week where I can go and get the other referrals. I will wait and see what happens.

In terms of me, I managed to get out of work today and went to a support group at the local Surestart center. I have a peer support contact and also have put my name down to receive information. They were lovely and I think its going to be good for me to have somewhere local where I can go and talk in person to people as well as having the support on here. They were pretty amazed with what the school is doing, which seemed like a good sign.

So there you go. I still wish this wasn't happening, but at least I am getting somewhere in terms of getting help for him - and me. No matter how slowly!

Hello, is this thread still relevant to anyone? We are mid-assessment this week and it would be great to hear form others in the same/similar boat.

DS1 is 4.5 and we have had concerns for a while now (links below for background):

here
here
here
and here

Started assessment last week and have so-far done the ADOS, ADI, seen the OT, clinical psych and SLT and have dentist and orthoptist to go. It has been a bit of a revelation actually as it seems like a LOT of his difficulties are down to sensory stuff. We tried some of the tricks the OT told us about last night at bath time / bedtime and the difference was amazing ? the nightly meltdowns which have just become part of our lives now just disappeared!

Is anyone else going through/about to go through/just been through diagnosis? Maybe we can swap stories/tips/frustrations to help us get through it with our sanity in tact!

Hi skidd I hadn't read the original thread til tonight but yes I recognised the tune of those alarm bells.

My DS (3.3) was dx in April within 4 months of 1st paeds meeting, despite being hf (our area is apparently very on the ball). Mind his assessment reads "compatible with a clinical dx of ASD" which has plenty of wriggle room, no?

We will be applying for statement later this year, ready for school, and have started ABA (with loads of useful advice from MN).

Would love to know how OP and others in this same, rather leaky and often off-course, boat are getting along.

Hi worrier princess,

That's great you have got a dx so early and have already started ABA - how is it going?

We will hear on Friday if DS has a dx but I'm pretty sure he won't. However, it has definitely been worth it to find out about all the sensory stuff - had no idea it could be so pervasive.

I would also love to know how the OP got on - it's more than a year since she started the thread!