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.

Back of the car. sigh

Hi All, Thanks for your responses and PMs. asdad - that boat is amazing :)

At the moment it feels like I need a sense of normality to kick in. I am going through every day as normal, but this whole situation with DS is in my mind all the time.

I am looking at everything that he does in terms of a disorder that he me may or may not have where as a couple of months ago I just took it all in my stride and didn't notice it at all. I need to get back to that point, so I can eat breakfast, but not listen do DS making noises as he eats and wondering if thats a sign. I need to enjoy sitting and watching a DVD instead of thinking about whether the fact he has watched it 10 times is an indicator or whether his bouncing up and down is because he's a lively 4 year old rather than a 4yo with ASD.

Don't get me wrong, I still love him the same and I actually wouldn't want to change him as he wouldn't be him then, but its just so bloody wearing thinking of everything in terms of whether or not he has a disorder.

Its not like I can turn it off either. Its just there. "DS has been making noises all morning - ASD" followed by "DS hasn't made any noises since he got home so not ASD". Please someone reassure me that this looking and examining and watching every nuance will stop soon so I can just go back to those happy days before someone pointed out that my child wasn't behaving like other children.

Diagnosis scares me. It really does. Part of me hopes for an explanation of why he behaves like he does and the other part of me - the larger part to be honest - really hopes that it comes to nothing and just some advice on how to be better parents. Clutching at straws perhaps?

In RL I am a bit of a control freak. It makes me a good manager, a difficult wife and works with small children, but I predict problems when the DCs are teens. Unfortunately it also means that when things like this happen outside of my control I try to get control back by knowing as much as I can an over-analysing to the Nth degree. Hence these long post.

I can't stop thinking about the meeting tomorrow, when I know I will find out nothing, but at least I am now going in armed with a load of questions and better understanding. This is only the meeting with the EP. God knows what I will be like when it comes to the assessment with the DP.

I've just read through the whole of this thread and found it sooo helpful in understanding my DS2 and my own feelings! DS2 (7) has finally been given a diagnosis of Aspergers, after 4 years of me telling everyone - school, family, friends, that I felt sure he was ASD. I've had all those classic responses, he's wilful/naughty/he'll grow out of it/a diagnosis will ruin his chances etc.

Just wanted to say - be patient, it can take a long time to get a diagnosis. I initially went to my GP when DS2 was about 4. The school didn't want to do anything and felt he might "grow out of it", then the GP referred him to the local CAMHS who were not greatly helpful. He was finally referred to Great Ormond Street because we were in central London at the time. They were amazingly helpful, visited the school to observe his behaviour, met with DH, me DS1 and DS2 and then did the ADOS test. After all this though it was still inconclusive, at age 5 1/2. He recently repeated the ADOS and GOSH felt that they could give a definite diagnosis of Aspergers. Of course I feel a bit upset and aprehensive but the diagnosis doesn't change who he is - it will just help all the family and friends etc understand him a bit better and give him the help he needs, and from my point of view that can only be positive.

Well done for getting through the whole thread and my long and waffling posts! I've found it so helpful to get everything that is in my head down here and the help from everyone has been brilliant. I'm losing sight of what is "normal" these days and this thread is helping me keep it in perspective.

DS will be 5 next month and its slightly different in that people have been saying that DS is different and I've been the one saying all of those things about growing out of it and all kids doing it. I am trying not to be too hard on myself about that one. I mean, why would I suspect anything? He was my first, I had no one to compare him to until I was on mat leave with no2 and even then I didn't meet that many children of his age.

Have you told your DS about the dx? Thats the other thing that I've been wondering about. If he gets a dx, of aspergers or ASD, how do I go about telling him?

Er....Perspective? Maybe I can help with that.

Aspies are the same as anyone else, except they process information in a different way.

Each thing they take onboard has to fit with everything else they have. If stuff or info arrives too fast, they cant handle it and overload. Adult Aspes usually need to hibernate every now and then to sort out their heads. Kids are the same, only they arnt allowed - so they explode.

Aspies are usually useless at relationships as they are usually blind to body language. If they want someone to know something they say so. Doesnt compute that others would just stand funny or use inflections. They simply dont respond in the same way as the rest of the population.

Now...

Bearing that lot in mind, trying to teach an Aspie in the same way as normal kids doesnt work. They only learn when they have a need, whereas most kids will hold pretty much anything you throw at them. However, the teachers arnt allowed to simply change their teaching strategies whenever they need to - just because a minority of kids dont respond.

So...

This system has developed where the schools or the parents refer the kids to "Mental Health specialists" to get a "certificate" stating that these kids are more likely to learn if you use the "Aspergers Teaching Manual" instead of the "normal" one.

The "diagnosis" is simply permission for the school to change its teaching methods.

A Statement of Special Educational Needs is basically a plan laying out what a panel - inc the teachers, specialists and parents think will best aid the child in learning.

None of this would make much sense to a 5 year old, and doesnt really have much bearing on home life IMHO - unless you realise that you can use the rules that Aspies live by to make your homelife easier.

Mine both know they are different, but Im not sure how aware they are about how different. We discuss where others struggle with what mine do and how we can sort of look normal so we dont frighten them. Being too "weird" is to find yourself shunned.

Home is the sanctuary where mine can eat pizza sandwiches dunked in strawberry ice cream - so long as he doesnt let it drip on my pigging carpet!

Hope that helps.

asdad - what a great post!
babyheave - I haven't spoken to DS2 about his diagnosis yet, we are planning to sit down with both DSs at the weekend and talk about it. DS1 understands that his brother finds certain things difficult to cope with. It helps that he had a friend in his old school who I am fairly certain was Aspergers, so he knows how this friend had difficulties in class etc. DS2 has some idea that he is different already I think - he says stuff like "my brain doesn't work like that" or "it's just the way I am" when he finds it hard to behave in certain situations. Sometimes he says "my brain is rubbish" so we need to explain that it definitely isnt!! I've ordered a couple of books - the Cats Have Aspergers one is supposed to be good (and we have just got two cats so hopefully he can relate to that!) and another for DS1 called "my brother has aspergers" or something. There are loads on Amazon and also lots on the NAS website. Lots of free leaflets you can order from NAS too.

I'm back from the meeting with the Ed Psych and sat at my desk in work. I think the best thing I can do right now is go and see my boss and let him know that under no circumstances are any blithering idiots are to be sent my way as I won't be held responsible for my actions.

Once I have had a cup of coffee (or three) I will post and update properly.

OK. Right now I should be in a meeting. My lovely boss has let me off so I can post on here get my head together before the more important meeting at 3 so I don't kill anyone so I can chair it sensibly.

I must admit that I was harbouring a secret feeling that when we met with the EP today, we would talk about DS and that we would all agree that he was fine, just a bit immature and would all agree that he was just bright and would grow out of it so we had nothing to worry about. I would then come back here, thank you sincerely for all of your help and support and trip off back to the world that I used to exist in.

Well. That was a bit delusional of me wasn't it. They are actually pretty convinced that he is on the spectrum, most probably Aspergers and will be writing directly to the assessment centre and my GP to see if they can get this formal assessment with the Paediatrician moving a bit quicker. The EP report which was meant to take 6-8 weeks has been promised for before Easter.

It would seem that like the saying "If it walks like a duck and talks like a duck, it probably is a duck" can be applied as follows for DS - "If he runs up and down like an aspie, if he talks incessantly and obsessively about dragons like an aspie, he is probably an aspie." (I like Aspie. So much nicer than calling him AS).

Putting my objective hat on, I think the meeting was a good one. The teachers described DS as "lovely" and it was interesting to hear their take on our little boy as there are actually a lot of positives going on. It was also worrying to hear some of the things they talked about as it seems that outside of the home his behaviour is more pronounced.

I am going to start with he positives first as I want to share why I am proud of him as well as why I am worried for him.

They all agreed that DS is gifted in some areas. At 4yo he has the expected vocabulary of someone in late KS2 and is able to use that vocabulary correctly and with ease. He is able to construct and tell stories well beyond what is expected of his age. He is able to create brilliant models in great detail and has made dragons (a firm favourite) time machines, robots, aeroplanes, cars and "inventions" out of all of the construction toys. He is good at drawing and can do great robots, time machines and dragons. (Spot the theme?). He is gentle and polite and kind to the other children. He just doesn't care if they are there or not. When he is interested in something he has brilliant concentration and really excels.

Now onto the stuff that causes concern..
If he isn't interested in something you can't get him to concentrate at all and they've tried no end of solutions to try and make this better to no avail. He gets stressed easily. He gets angry and very upset very quickly, especially if you change the school routine. He gets upset if you try to make him work in a group unless it is with the two children who he likes in the class. He can go from being fine to shouting out of having a melt down over seemingly innocuous things. He doesn't make friends and plays by himself in the playground, although one of the little girls, who according to the teacher is very caring, will go and "look after" DS and they are friends. There is also a boy who likes to make models with him.

He rolls around on the floor a lot. This was a new one on us as he only does it in school, but often. He eats wood - he has chewed their book box . He does this at home as well, but I can't believe he chewed the school furniture! . He gets stressed if you get him to do group work and he finds it hard to concentrate in group activities so he will find something (anything) to distract himself.

We discussed how he hates loud sounds, but loves music. That he's tactile and strokes the teachers [rolls eyes] Strokes. The. Teachers. if they have nice clothes on.

Anyway at the end of the meeting we answered a questionnaire (I've lost the piece of paper I wrote down what it was called on, bit was a childrens communication one CCC2? Does that ring a bell? and that is going to be passed on to the DP along with the rest of the report.

I have to go and do some work now as my 3pm meeting is just minutes away.

One thing I was VERY grateful for was that my DH spoke a lot. He said what he did to me in private - that when this all started he thought it wouldn't surprise him if he was on the spectrum somewhere. He also contributed throughout the meeting and was giving examples of where he had concerns about DS's behaviour. I am so grateful that he did as we need to work together on this one, whatever happens.

Medals are waiting for everyone who has read this post.

babyheave,

(((((((((babyheave)))))))))))

Think you now need to be kind to yourself, these kinds of meetings can and do knock the wind out of the sails (said as a veteran of many meetings at the Child development centre).

Well done your DH as well for speaking up; as you have seen you and he are going to be your son's best - and only - advocates here.

Did anyone mention the word "Statement" to you during the meeting?.

I would seriously consider now applying for a Statement for your son re his educational needs because he does need additional support within the classroom. His needs are going to have to be protected particularly in the longer term (juniors/secondary school for example). I suggest this too as it can all fall apart at school all too quickly particularly as the child goes further up the school system. The social side of school with all its unwritten rules can be all too complicated and nightmarish for many children on the autistic sprctrum with the resultant fallout from having to conform given to the parents at home.

Hi Babyheave. Bit of a horrible day, I'm sorry it didn't go they way you had secretly hoped for, but at least you aren't having to convince the EP and the school that there's a problem. Small silver lining, I know.

Did they discuss at the meeting what the school will do from here? SA+ or statutory assessment? Or is it a bit too early for you to be thinking of anything beyond the word asperger? Remember, the EP can't DX, you still need the paed to do that, but it does no harm to start thinking Aspie. It won't hurt him.

Give him a big hug tonight and have . He does sound lovely. (eating the school's book box!)

Babyheave

Hope you are home and recovering from your tough day.

((very unmnetty manly hug))

No matter how fantastic it is that the school have picked all this up at such an early age (and it is fantastic) its bound to feel like a kick in the guts when they actually go through it all with you. Both you and dh are bound to need some time to take it all in and process it.

I'd like to tell you it gets easier, but if/when he does get a diagnosis, be prepared to revisit all the same emotions.

I also cried when I received each observation report (and there have been many) as its a huge shock and upset to read/hear about how much he struggles when I am not there to support him. The first ever observation report was really upsetting, as up until that point (he was 8 years old) not one teacher had raised any of his behaviours as a problem, despite our suggesting AS to them and we had absolutely no idea how he behaved in class. I honestly didn't recognise the child they described as my ds - until the next three observations from different professionals all said the same thing.

I'm pleased your dh was actively involved and you can work as a team now. It took my dh a lot longer to reach that point, not helped of course by the school consistently denying their was a problem.

Its also great to hear that they have a big list of your ds's strengths as well as an awareness of his weaknesses.

As Ellen said (hi Ellen, I'm stalking you this time ) its good that they have been able to talk through all of their concerns with you and not having to fight to get their support is a huge plus, but they also need to outline their plan of action and get moving quickly on putting support in place. If they have already tried lots of strategies, but have been unsuccessful, they are in a good position to either apply for a statement or support your application at this point.

I've probably crossposted with lots of people now, as I've been disturbed a dozen times at least while trying to type this. We are just back from an extra IEP review meeting with ds1's teacher ourselves and I really just wanted to add my support and understanding of what you've been through today.

Thanks for all your replies. I'll reply properly tomorrow once the has worn off, and l've had chance to sleep on it. BH.

babyheave- such a lot to process. It will probably take bit of time to make that cognitive shift I guess. Your ds sounds lovely and v bright, which should help him develop compensatory strategies if he does struggle with social communication.

We use CCC2 at work- designed by Dorothy Bishop and colleagues at Oxford, taps speech, pragmatic language use and sociability.

I think I've already sort of made the cognitive shift to seeing ds as aspie, but haven't heard it from the mouth of a professional yet. I guess each step in the process can take the wind out of you, no matter how well prepared you are.

Thinking of you and your ds, and I hope the referral process goes quickly for you.

Today I have mostly been feeling at everyone and everything. This week has been such a pain in the ass. I spent the first two days thinking about the meeting on Wed. The whole of yesterday in the meeting or going over it in my head and all of today wanting to be horrible to eveyone.

Prizes for wonderfulness go to the friend who let me cry and fed me biscuits and the woman who I share an office with, who has just been lovely and who has offered to introduce me to her friend who has a DS with Aspergers who is now in secondary school and doing well, so I can talk in person to someone who has been through it all.

Prizes for being crap go to another friend who popped in and when I told her said "god well you think that's bad I've had the worst day ever". I kid you not. Her bad day? The wire came out of her bra while she was at work and she's lost her cake tin. Yes, that's right people, crap lingerie and poor housekeeping are much worse tha having a child with special needs. Remember that won't you, next time you think you're having a bad day. .

I told my parents. The first time I had to walk away as the two comments I got were - "Well everyone has that." They do? and also, the classic "They've obviously got nothing better to do with their time." Thank you, thank you very much for that support. I steeled myself and went back later for a more constructive discussion. They love DS. They don't want there to be anything wrong. The conversation worked better when I said that it could just be that he was bright and that there was nothing to lose having him assessed. They are convinced that its the school's fault. I'm going to let them if that helps.

So now I just have to wait until I get the EP report, which I hope will include the results of the tests they did and give myself chance to get used to this new level of information, before the next hurdle.

I don't think anything can prepare you for having someone tell you there is something wrong with your child, no matter how much you expect it and how much you know it to be true. I had this when he was in the NICU after he was born and also after he was scalded in an accident. It doesn't get any easier, but at least experience has taught me that it becomes part of your normality after a while (Although I can't watch Baby ER or any program about burns any more - will I be able to watch child development, I wonder?)

Normal, logical service will be resumed. Just not yet.

I forgot to reply to other questions - He is on SA+ and I will be getting an IEP for him. I brough up getting him assessed for a statement, but they recommended waiting for his dx to come through, but also said there was a green paper about taking the requirement away from the LEA so there may not even be statements, so they may not fund it.

I was in no place to argue, so plan of action is to send in a request for an assessment once I have the report from the EP. I will talk to the SENCO first to see if she is prepared to request one as it would be good if it could come from the school, but will go ahead and request one myself if not.

p.s. Thank you for all taking the time to reply and also the ((())). They really helped and I won't tell anyone. Promise :)

Oh babyheave you poor thing.

SA + is a good starting point but the line about waiting for a dx is crap (we got caught out with that one and are now just starting out on the statementing process with ds nearly 9 years old but a lesson worth learning).

Yes they are most likely going to do away with statements, but not yet, the new-style system is going to be trialled in some areas first and the official line is that people should continue to apply as normal, as those in the system so-to-speak will be shifted over to the new system anyway.

They should really work with you to draw up the IEP rather than just handing it to you as a done deal. Then they should review it with you regularly. I spent half of last night thrashing out a truly horrendous effort of an IEP that was anything but SMART with ds's teacher - not her fault on this occasion, but it was pointless in its current state. Between myself dh and the teacher we ended the meeting with a set of four, Specific, Measurable, Attainable and Time-limited targets for ds, as well as identifying a few hundred more that need addressing in the future should he achieve the current ones. If we had let them just create an IEP and hand it to us, it wouldn't have been worth the paper it was written on.

Grrr! To the unsympathetic/selfish friend. Unfortunately, some people who have never come into contact with SNs, let alone had their own lives touched or affected by them really don't have a clue. Its both and at the same time.

Give yourself some space to breathe and if you can do something completely unrelated to SNs over the weekend. It is hard, but remember your ds may have SNs, but that isn't who he is, he is just your lovely boy and you are doing a fantastic job at getting him all the help and support he's likely to need to go on and do amazing things with his life.

Hi babyheave. Take time to feel better. You can't do everything at once and you need time to get over this. I'm glad your DS is getting support at school and an IEP on SA+. And he does sound lovely. My ds3 (supposed to be NT) used to lick the lunchtime supervisors coats, and he still hugs anyone who'll let him. (He's 8) So a bit of stroking the teachers' clothes sounds normal to me. (!)

This business about the green paper is an excuse ATM. It's only a green paper and won't become law for a good couple of years. TBH tho' all the more reason to get some provision sorted out sooner rather than later. Don't let the EP from the LA try to fob you off.

Let the dust settle a bit by all means. You need some time to get your head straight.

I've had the worst day ever, too. The elastic went on my (large) pants. Good job I was wearing trousers!

Moose, leave me alone!

Oi! I woz ere first!

I know where you live, moose...

Actually, I don't!?

Sorry for the hijack babyheave, its that Ellen one, she's always following me around.

You mean you don't all live in my keyboard?

I once had a day when the elastic went in my knickers. It wasn't the best day, I must admit. There's nothing so dignified as walking through work trying to hoik up your pants.

Underwear failures, always good for a laff eh?

Off to bed now, night ladies.

talking of parents reactions...

When we first realized that DS has AS and he was in the middle of all the assessments, we worked out that my mum's brother (who had died not long before) probably had it too, I'd only known him as an adult, but it turned out that there'd been a lot of issues as a small child I hadn't been aware of (this long intro is relevant, honestly, lol)

So I phone her (she lives 3 hours away) after an assessment to say how it went (at the time it was yep definitely autistic but we're not willing to diagnose exactly yet)

For her to get all upset and start complaining about how she couldn't believe that this was happening to her and that after having a messed up childhood because of her brother now it was messing up her life again

I laugh about it now, well I have to, or I think I'd slap her, rofl (she's lovely really just a bit self-centred)