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.

Hmm, well I shall be looking at DS's fingers tomorrow and we shall see.

DH is long fingered, good at maths and to be honest I suspect the apple hasn't fallen far from the tree. The more I learn, the more it makes sense IYSWIM.

Not heard that one before! My ring fingers are very slightly longer than my index fingers

Don't think it's complete bollocks as there's been so much real research gone into it, but the ASD link is just a theory.

Sorry ellen, didn't mean to be rude. I meant the ASD link- it sounds like scratching around for something tangible to mark out such a complex and still relatively poorly understood condition. But I don't know the research, so won't pretend I do.

And ds's ring finger is noticeably longer than his index...

Hope you've had a good day today babyheave.

I should have put 'complete' in italics. The autism link could easily be bollocks!

Woofie, you're right, though, we've sidetracked.

Hope today is a better one babyheave. I'd give yourself some time off until after Easter and just enjoy your DS for himself for a bit.

Hi Babyheave and others :o)

Lots of good advice on this thread.

Im going through the process with my son too.

Hes been formally diagnosed very recently after issues being noted since he was 3 [hes now 8]

Diagnosis of autistic spectrum disorder-Aspergers was initially mentioned, though he did have speech and language problems initially so think thats why he got a general ASD diagnosis.

I agree to push/support a statement, even if his current school is good he will definitely need it in the future ie high school.

I know what you mean about things people say, if i had a £1 for every time someone had said 'oh but all kids do that' or my particular not favourite 'everyones a little bit autistic' !!! aarrgghh!!

Also the thing about 'labelling' people need to realise that label or not hes still autistic! you will need the label for him to access the support he [and you] will need.

Im sure people wouldnt be so resistant to a diagnosis of for example diabetes, my opinion is that some people see ASDs as a 'mental' issue and so attach to it the stigma of mental health issues, its very wrong and it pisses me off hugely.

ASDs are a hidden disability [even though symptoms arent] but because our children can walk and have all limbs intact some people think theres nothing 'wrong' with them and lots of people will come out with all that 'bad parenting' bollox.

This forum and others like it are a good source of support and advice, also i suggest [you probably have started to already] researching the legal side of things re the statementing process, us parents really need to know our and our childrens rights as some schools etc will try to fob you off.

Good luck with it all, there are lots of people here that truely understand what you're going through-keep posting and venting!

asdad Ive read some of your posts on here and on other forums in the past, i enjoy reading your posts and its helpful to hear about ASDs from your perspective.

To add- I think the stigma surrounding mental health issues is wrong!

Morning all. What a confusing weekend this has been!

DS was lovely on Friday, was brilliant on Saturday. On Saturday evening we went to stay at someone else's house. Both children were well behaved and DS even went to bed voluntarily as he was tired. No strops no tantrums, not running up and down making funny noises, no flapping around of arms or anything. As I watched him make conversation easily and enjoy himself in a relaxed way - I had this thought - "There is nothing wrong with him, he's just bright".

Then, as soon as it had stopped, on Sunday afternoon, he was back to running up and down the room and around the house, making funny noises. He couldn't play by himself as we kept on hearing these strops as something didn't do what he wanted it to do, so we thought we'd watch a film, but he got over excited watching it and was jumping up and down while watching it, flapping his hands and his arms around and then going to hide and coming back in. It almost destroyed the bloody sofa!! We had to give up on watching the film in the end and shove him onto the trampoline for half an hour to try and get him to wind down.

So what the heck happened there? Is this a usual pattern where you can have great "normal " (god how I am growing to LOATHE that word) time and then a really difficult day? Its almost like processing what had happened was just too much for him to do, so he couldn't do anything.

I love my trampoline by the way. I don't know what it is about bouncing, but it bloody well works and it saves my furniture.

I think the effort of trying to cope in certain situations just bubbles away under the lid until they kinda explode sometimes!

I know my lad sometimes needs time with no human interaction (though he'll snuggle his dog) to just "be" sometimes. When this happens I just leave him be till he's ready to rejoin the world.

Babyheave

I think bochead has hit the nail on the head.

Sounds like your ds employed all his coping strategies on Saturday and overnight to Sunday. Then when he got home on Sunday afternoon, he relaxed and allowed himself to be himself, iyswim.

Redirecting him onto the trampoline was inspired and works for a lot of children with AS. My ds is more like bochead's and when he gets into that state he has to curl up and shut the world out. He usually does this by immersing himself in a book, but his ultimate destres/wind down is his Nintendo DS time. Like bochead, we just leave him to it and he comes back to us when he's ready.

My ds was away on a school trip this weekend and the Headmaster and teachers all told me how well behaved he'd been, no trouble at all and a real pleasure to have along. Well, he came home fought with his brother almost immediately, several times and over absoultely nothing, then spent a couple of hours full scale wailing, stimming and tic-ing because he 'will never see 'X Centre' again'. Put him to bed, he couldn't sleep, came downstairs and started wailing again, nothing would/could comfort or calm him and it pretty much stayed like that till he passed out from exhaustion at 10.30 pm.

Thankfully he woke up late but refreshed this morning and went to school with no complaints, but he barely spoke to any of us and spent the whole time reading a magazine without even looking up. I used to get offended when he did this, but now I know its just what he needs to do and isn't personal.

When my two do that, I drive them to a little used lane, push them out of the car and say run. Run that way. Then follow them with the car. I make sure Im not close enough to hit them, and they go at their own pace. Sometimes it takes 100yards, other a couple of miles. They then burst into tears. Once they have done that, I let them back into the car saying nothing. They sort themselves out on the way home and are fine again.

Happens once every couple of weeks or so.

Trampoline is good too, but sometimes they need to get it all out.

I get rid of mine by reading, walking smashing things or screaching. If I cant get rid of it, I end up self destructing.

It may sound ridiculous, but its not something that I can actually control. I only get like that once every 6 months or so. But then Im a lot older.

In a way its all about a shift in how I am looking at his behaviour. He's always had times when he's run around and we've taken him out on his bike or to the park or onto the trampoline. Now I know there is a reason behind it other than normal (yuk) childish restlessness.

I just have a real sadness inside at the moment. I'm not for one moment saying that he won't do OK and be happy in himself, but this was never on the list and I can't get away from the fact that I don't want there to be anything wrong, no matter how my rational head tells me that isn't going to happen and no matter how much its not the end of the world.

Its something thats in my head at the moment. I love my DS very, very much, but no matter how much I love him just as he is, I do wish that he was one of those confident boisterous little boys in his class. Its like I'm grieving for what he won't be and once I have dealt with that, I can get back to enjoying who he is.

You are grieving, babyheave. For the child you thought you were going to have. And it's a very real grief. You have to give yourself time to come to terms with it. You may never get over it, but life goes on. Your lovely DS needs you and you have to carry on. You do love him for who he is, but, it wasn't meant to be this way.

Don't expect to get over it quickly. I've had 8 years since my DS2's DX and I still wish things could have been easier. But I am over the grief. My DS is autistic, and as the time had gone on that imaginary child who he might have been has gone further away. All I know is him as he is. Annoying and tantrumy, delightful and funny, weird and embarrassing, gorgeous and unique. I really don't know who he might have been, just who he is.

But it has taken years to get to this point. You will get there, but for now, be kind to yourself and allow yourself to feel angry and sad without feeling guilty about it. You have the right to be angry and sad. It doesn't mean you love him any less because you wish he wasn't autistic.

Babyheave, what you are feeling is totally normal. As Ellen says you are grieving for the child you thought you had and for the person you thought he would grow into.

Our dcs can and do constantly surprise us. When I was at your stage, I never would have believed that my ds could go on an outward bound course, let alone love every minute of it and handle everything that was thrown at him. I am learning to have more faith in him and allow myself to believe that he is capable of much more than I ever thought he would be.

Something that helped me a lot was my sister telling me that all three of her dcs have turned out completely different to the way she planned/predicted - and they are all nt. I think we all have a dream of how we'd like our dcs to be and even parents of nt children go through a similar thing at some stage, only later than we do - when they realise that their children have grown up and away from them and are making life choices that are nothing like the hopes and aspirations they had for them.

Nobody tells you any of this before you have children do they. All the pain and grieving that's involved with being a parent. We know that we will always worry about them, but nothing can prepare you for the heart-rending reality and raw emotion of it all.

You need to honour this feeling and allow yourself to process it. You will know when you are ready to move on and that isn't to say that the feeling won't ever come back, but you will find some level of peace and acceptance.

((()))

Thanks all. I've had an utterly pants week of work, but will take a quick moment to update.

First off I am waiting on tenterhooks, probably for no reason at all, for the EP report to land on my doormat or come in via school. I was told it would be written by Easter and the school breaks up tomorrow, so in my head I was hoping it may arrive tomorrow although realistically I know I won't get it then. I should imagine it will go to the school and then I will have to wait until after the Easter break before I get anything back and I make that 3 weeks if you factor in not getting it the week with only 3 days in at the end of the month.

Secondly, I really need to give up trying to discuss what is going on with anyone as my friends, who are so lovely at most other times are being particularly crap about this. I can forgive people not knowing what to say, but am utterly agog at some of the crap that they come out with. These are genuine things that have been said to me over the last week. In order of utter cuntishness. (I don't use that word often but...)

"He's just gifted and if the government wasted less money on the thick children they could support him more" (Yes, I know )

"Well if they diagnose him, you'd better get a second opinion as they will label kids with anything these days."

and my all time favourite - "Well he's always been weird so at least there's a reason now."

Then I come onto MN and some twatbadger fool is harping on about disorders and poor parenting [sore point emoticon], which I am suddenly taking very personally.

I mean, FFS! Taking the MN posters out of the equation I would have expected better from my friends than coming out with that crap and actually I don't know if I want to talk to persons 1&3 again in any time soon.

DH asks me what do I expect from our friends and doesn't think I should talk about it at all as its personal. I know that, but when something like this is is playing such a major part in your whole world view as this is at the moment, I do want to be able to talk to my friends and I'm just infuriated that there is only one who has been great.

Do people out there really believe that parents make this shit up and want their child to have a problem? Who the fuck would want their child to be autistic?

I am also growing to dislike two words intensely.

Normal Well until someone can tell me what the fuck NORMAL is then I just don't want to hear it. DS is not going to be "Normal" but at the same time "everyone is somewhere on the autistic spectrum". Well that makes him Grade A normal then doesn't it you twunts.

Label My child is not going to have a LABEL. I am not LABELLING my child. He will have a diagnosis, made by a professional or group of professionals, after an assessment. A diagnosis is not a bloody Label. (another one for my badge collection).

On top of all of that DS completely broke my heart the other day as we were telling stories in the car about robots going to school (as you do) and he asked me to tell a story about how to make friends as he didn't know how to. ARGH.

Apologies for this rant, but god it feels good to get it out somewhere.

Rant away babyheave - I've been doing it all week and no sign of letting up any time soon.

Sorry its all so horrible for you at the moment. No advice really as am full up to overflowing myself at the moment and I'd probably end up making you feel worse.

(Am loving the word twatbadger though )

moosemama, if you want to share go ahead. I am just very ranty today, so everyone can join in if they want.

Thank you re: twatbadger. It just trips nicely off the tongue and describes twatbadgers perfectly.

Thanks babyheave, I wouldn't know where to start, I've pretty much ranted non-stop both online and in rl since last night, so its probably time to try and calm down now.

babyheave

I love that word twatbadger, you should copyright that word!.

You do learn to ignore the naysayers, the deniers and as Mr T in the A Team says, "I pity the fool". Its a process however, that takes an awful long time and its a dark road on occasion.

Rant away, you too Moosemama when you feel like it.

Would be interested to learn of what the EP report says when it is received. Did this person by the way mention the word Statement to you?. I realise I do go on about such things but having this in place early on will help you and your son no end. You don't want him to just manage in Infants for it to all come crashing down in Juniors; I have seen it happen and would write anytime on here to prevent someone else suffering that particular fate.

A statement (if you receive a well written one anyway, these often need rewriting and fine tuning) will be a properly documented record of his additional support needs, anything else offered to you is not legally binding and can as a result fall short of overall requirements.

I have personally seen too many children slip through the net due to schools not being able or wanting to address their needs. They have also fobbed parents off and failed their charges. That now makes me feel very sad. I am truly indebted to my friend who advised me to apply for a Statement to the LEA very early on.

I'm now awfy distracted by the twatbadger - does it live there? or look like one? anyway...lol

I don't know if there's an order for anger, but I find myself angry about all sorts of things that never used to be an issue - I've been known to do a whole ten minute rant on why schools shouldn't have bells for instance, rofl

But yeah, mostly people, friends can be hard work - I tend to think that those who say stupid things, but are doing it out of empathy and are trying to help are worth keeping, some of the others aren't

"Well he's always been weird so at least there's a reason now." that for instance (obviously you'll know better because it's your friend) could be a well meaning comment trying to say that a diagnosis is a good thing - but put badly...

I did find for ages that no-one could say the right thing to me at all, if they were sad it annoyed me because he's still the same child, if they denied it then they were ignoring how I felt, if they tried to make a joke then they were being flippant - I was all over the blooming place and there were really very few people who managed to navigate it, lol, but that got a bit better

and then some people are just bloody ignorant

"Do people out there really believe that parents make this shit up and want their child to have a problem?"

unfortunately some people really do think that, they get extra help at school and benefits you know - as if that is somehow worth having a child with autism. To be fair I don't know anyone with any experience with it that thinks that as if they did previously think that as soon as they realize how it is, they'd soon change their minds.

The no friends thing is horrible, it's absolutely hear wrenching when your child says something like that

Hello Babyheave, just wanted to say something, hope it helps.
First of all, you are grieving. You need to give yourself and dh time to come to terms with the loss of the child you thought you had, and the future you thought he had. That doesn't mean that your ds is, in any way, less but things are different now. Not better, or necessarily worse, just different.
Your parents sound very like mine when my ds was initially diagnosed (10 years ago - he'll be 14 soon).
My mum particularly, thought that I was exaggerating, but after she accompanied me to a few multi-agency reviews, and spoke herself to some of the professionals involved in my ds's care, she started to realise what was going on.
I personally was quite glad of "a label". A one word answer to "why's he doing that?" "What's wrong with him?" Something to put on the forms where it says "any other information", something to alert people to the fact that they needed to look out for him.

A couple of my friends sound a bit like yours - maybe they'll see sense, maybe they won't. But that doesn't mean you should stop talking about your ds and how you're feeling about his dx. It's very early days for all of you - including your friends.

Ooo, twatbadger! Word of the day, if not week. Thanks Babyheave. I'll have to try to drop it into conversation.

I really shouldn't have such a sense of achievement with twatbadger, but I'm secretly pleased you all appreciate 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.

I think you are right about my friends and it wouldn?t matter what anyone said to me at the moment. I think I need to feel more confident in myself about what is going on before I can take anything that anyone else says. Maybe if I can talk confidently about it, then they will be more likely to listen than to come out with random comments - some more helpful than others!!

I'm really grateful to everyone who has responded to my thread. You don't know how helpful it?s been both in terms of practical advice and support too. It's helping me keep sane and that?s no mean feat.

I have pencilled in my next meltdown for the day I get the EP report.

babyheave thanks so much for your post about it's not a label but a dx. It has bugged me for ages that my mum is really anti 'labelling' people, and there is nothing wrong with DS etc etc he is just odd. So much so - she has phoned me up randomly to tell me that I mustn't get him labelled, that I haven't told her he has been dx-ed with autism. Your post finally gives me the words to use if I ever tell her.

I love that word! My purpose in life tomorrow is finding some event to use it lol!

You are doing great dont let ignorance from others get you down easier said than done seeing as our vulnerability level goes up and down extremely fast!)

I would agree on the anger coming next. In any situation I get upset/get angry/get even.

I am still grieving at the mo and emotions are so up and down. I know that when the day comes that the official dx arrives I am going to really fall apart. I get angry at stupidness of ppls comments/looks. Then all of a sudden a light switches on and I get even. My way of doing this is to quite simply hold head high and just plain tell ppl they are being totally offensive in their comments. I say people because quite frankly I avoid the making of friends. Been hurt and used too many times to warrant the wanting of a friendship. I also keep myself to myself in community and there is very little anyone knows about me and I like it that way. I am lucky like you to have a DH (with very broad shoulders and patience of a saint) and he is my friend.

Just tell your so called "friends" to stop their comments and dont discuss or pass opinion unless they are prepared to do some revision and give them some literature or web addresses to look at. If they are your friends then they will comply............that saying another true friend would be honest enough to say they are nervous or uncomfortable about discussing ds not come out with the utter rubbish you have posted here.

Keep your chin up as all you have is a lovely ds who just needs a help up the life ladder just like mine and you are doing the very best for him to make sure he gets it xxxx