Got diagnosis... what now?

[Billynomateswontbemyfriend]

So, after 18months plus of wondering, worrying, pushing and pulling...

DS1 (3.8YO) finally got a dignosis of 'being on the spectrum' today. A plan will be put together to get a more formal diagnosis in the next few weeks. This is not news to me.

What happens now? I am feeling relieved but anxious.

I would be so grateful to hear of people's experiences please. Did you tell people? Did you wait for more results? So far, have told my mum and DH. Neither really want to believe it, but I've known for atleast a year that something wasn't 'quite right'.

Also, I have questions about medication. I am adament that I do not want DS1 medicated at this time. He is 3YO. There is nothing about his behaviour that needs to be changed at this point. I just need to work out ways to deal with the way he is. I can refuse to give him meds, right? He is not aggressive etc.,

thanks,

Oh, gosh - I have just posted on your other thread and now seen this. That is a very quick diagnosis. I'm so sorry that you have to deal with this, but so relieved too for you that you don't have to keep fighting to prove to other people that there is something not right. You knew, didn't you?

My son is not on the spectrum, but he does have ASD traits (sub threshold of diagnosis) and has been assessed for it twice. I found the NAS very helpful. I spoke to one of their advisors and he was incredibly kind and helpful and sent me loads of useful information.

Even though you suspected this, I know receiving a diagnosis is hard. I was very upset for quite a while, once I had the diagnosis (Tourettes and other stuff) in black and white. I don't think twice about it now. It's just the way things are. DS is still the same lovely boy he always was, but we now have more ideas of how to help him and we receive more support.

There are lots of people here with children on the spectrum and I'm sure someone will be along soon to advise you.

Its strange when you get that piece of paper confirming something is wrong it knocks you back.
I found out this week my DS actually does have developmental delays even tho everyone ignored me and called me neurotic.

Does your DS have a curved pinky finger? My son does and so far all the Drs we have seen mentions it and tells me its significant although no one has mentioned autism and its brushed aside when i do.

At least now he has a diagnosis so help can be sought and i do wish you all well. Until i found this site i didnt realise so many mums felt like i did.

Toffeewhirl - thankyou for this post and also my other thread. Absolutely DEFINITELY the reason I am feeling relieved about this is the fact that I am no longer 'imagining' this. I feel I have made a major breakthrough in helping DS1. DH was a bit sad about it, I think he really didn't want to believe it, but we cannot change DS1, only help him the way he is.

I am in the extremely fortunate position of being able to self-pay (though I think DS1's private insurance might kick in - fingers crossed) which is how I managed to get the referral so fast. I was just at the end of my tether having people say 'oh he'll grow out of it' 'it's just a phase'. I'm his mother. I love him no matter what, but I know that this (whatever this is) is not a phase. I do understand about people 'blaming' the mother. I have a DS2 who is only a little over a year younger than DS1 who patently shows no similar ASD traits, and my mum says all the time: But you bring them both up the same way... As though it's something I specifically do which makes DS1 the way he is.

Funnily enough, I don't feel knocked back about the diagnosis. I have known this for a long time. I feel relieved that we can make progress down the right track and come up with the right plan of action for DS1.

The only thing I am anxious about is I don't know what the future holds for us or what will be suggested. I am absolutely adament that DS1 will not be medicated at this time, yet have heard about numerous stories of ritalin (and other drugs) being prescribed. I am also having to review all the hopes and dreams I had for my (UNashamedly!) PFB. We're already at the point of having to deal with the fact that he won't go to the prep school we had selected for him when he was under 6 months old (which DS2 will go to), but this is my problem not DS1's.

Well, I'm glad that you were able to skip the tortuous waiting period - much better for you and your DS. I'm glad too that you are feeling primarily relieved rather than upset.

You may find that not everyone accepts the diagnosis straight away, even now. My MIL still doesn't accept my DS's diagnosis. She even mulls over his problems out loud, "I wonder what it is that makes him like this!" . And she tries to reassure me by telling me that it's not my fault, but won't listen when I say, "I know that, it's genetic!" It is very frustrating, but she has her own issues.

I don't think most children with autism are medicated - and certainly not at this young age. Medication was never suggested for my DS until he was 12. I think doctors are wary of prescribing drugs to such young children.

Your son is still your PFB, even though he will have a different future from the one you imagined. It's astonishing how quickly one adjusts to that fact. Like you, I also have to separate my problems from my DSs. I struggle with him not being given higher academic targets at school, but that is because I was academically ambitious and I wanted him to do well. But I realise that he has enough on his plate coping with his special needs and that is what he needs help with. The rest is a secondary consideration.

I can really understand you worrying about what the future holds. The only way I deal with this is to focus on the 'here and now' and not think about things that haven't happened yet. I do sometimes have flashes of panic when I wonder how on earth DS will ever get any GCSEs or manage a job, but I push it aside as we have a long, long way to go before that and there is no point in worrying unnecessarily.

Now that you have a diagnosis, you can begin to make progress in getting the help and support you need. This is sorely lacking on the NHS, unfortunately, but at least you are in a position where you know what your son's needs are and can begin to plan accordingly. Your instincts have served you well so far and I'm sure they will serve you just as well in your search for help. Good luck!

Thankyou Toffeewhirl - Your advice is very much appreciated.

Rosie - how old is your DC? No, DS1 doesn't have a curved little finger. If anything, he is amazingly athletic. Amazingly so. He is faster than Usain Bolt!!! But, ironically, one thing he is good is reading and writing and I have (recently) learned is also linked to ASD / autism.
WHat developmental delays does your DC have?

Chronoligical age 3 years 5 months,
Locomotor 2 years 10 months,
social 2years 4months
hearing and speech 21months
eye hand coordination 2years 10months
practical reasoning - no score

From the above it is clear that little dude has general developmental delay significantly delayed in hearing, speech and social skills. He did not score for practical reasoning scale which is highly influenced by the speech and language scale.

The above is the results letter we had from the hospital. We know he has to see a speech therapist due to his lack of talking although no matter how good she is he wont take to her for at least 6 months. He is very shy and insecure around new people. We will get occupational health therapist and physiotherapist if his scores dont improve in 6 months. Sigh.

He had an xray of his bones which said he had a bone age of 1 and a half and that was when he was 2 and a half but Dr said not to worry about it.

The 4 consultants he has seen so far have all said his curved finger, his small head and lack of growth are significant. But yet no conclusions or even suggestions of what is wrong. I dont care whats wrong i just want to help him have a fulfilled and loving life in whatever capacity it may be.

I am going to ask on Wednesday what they suspect because after 18 months something must be suspected now.

Hi Rosie, Yes I agree that the lack of answers after such a long time is frustrating - especially as they reach school age.

My DS sounds quite different. He is very tall (needs his clothes taken in, as he needs age 6YO in length, but only 3-4 in girth!) and VERY athletic.. If anything, he has a rather large head and rather excellerated growth. We have been putting his behaviour down to the amount of testosterone he must have, but it got to the point, I couldn't put it off any longer.

Also, my DS is very warm and affectionate to people (even strangers) which is actually quite disconcerting. I worry so much about losing him, as he would wander off with anyone . He wouldn't think to look for me which my DS2 would.

I agree, though, the only goal is a happy and fulfilled life. In whatever form that takes.

At least we know we are not alone

accelarated

wow so we have children at totally different ends of the scale in many ways. My DS is still in 9-12 months 12-18month trousers depending on the trousers. Any bigger and they fall off constantly.
I found out my DS starts reception class in September and it actually broke my heart. I dont know why i thought he would have another year with me...maybe i was hoping i could work really hard with him and make him not as behind as the other kids. I sound like a horrid mum.

I know my DS wouldnt go off with anyone as he is constantly stuck to my hip. I have tried to be mean and such but he just puts his arms up and mumbles hug. or just pulls my top so much and starts climbing up my legs.

My DS does this horrid moan thing when we are out...it drives me nuts its not a cry its just a whinge and it doesnt stop until we get home. People look at him as if he is a horrid child.And he isnt really he just needs alot of time and attention.
We have hospital again on Wednesday and i am hoping we can finally start getting some answers. With school only 7 months away I want to make sure i have the facts so i can get him the help if he needs it.

And this site has been a godsend to me, really made me feel like i am not alone.

Yes, lots of differences, but lots of similarities too!

I too deal with people looking at DS1 like he's a horrid child. He does appear (physically) much older than he actually is, but his speech (especially) is delayed. Well, not so much delayed as just a bit odd, and he can be socially inept.

One thing I can ABSOLUTELY identify with is the the starting school. DS1 actually has a tutor instead of nursery (which he can't cope with) and, academically, he is way ahead but socially, we are still well behind.

Does your DS go to nursery of any kind?

And you don't sound like a horrid mum

Yep he goes to nursery the usual 5 days a week for 3 hours in the morning. Because he is not toilet trained (hate that phrase makes kids sound like dogs lol) i have to be on standby and cant go far incase i am needed to make a dash to school to change him.
He is coping with school as long as OH keeps him in his routine. He always has to play with the sandpit first and there is a certain teaching assisant he likes to be around.
I thought it was best to get him into the routine of being away from me because at school thats what happens. He enjoys it and nursery are willing to work with us to get him where he needs to be. The SN co ordinater has already been past the notes on his development and in the next few days i will be asking for an appointment to see both his appointed nursery teacher and the SN lady so we can start working on a plan.

My DD2 is so advanced at school its scary....so my 2 youngest are as far apart as possible.

And thanks I am horrid some times. Atm i feel overwhelmed and trying to juggle. Making a list didnt work out this weekend lol.

Billly we are on the cusp (I hope!) of a diagnosis here. My DS has already been diagnosed with a learning disability but paradoxically his verbal abilities are way ahead of his age. Makes him sound incredibly smart and I think people then expect him to BE incredibly smart (which he is! It isn't reflected academically), and then they are confused by the child that can barely write his own name. :( I expect he will be diagnosed with Aspergers but possibly DS doesn't have it 'strongly' enough to get the diagnosis. Who knows. I have known there was something 'different' about him since he was 3, he is now 9, 10 in March. For a long time I was the only one that could see it. My parents only started to believe me when professionals started confirming what I was saying, which took a few years. Even so, my mother went off on a rant the other day about how all the desks are not in rows at school but rather are in groups, and somehow this explains DS's learning disability?! DH was of the 'if you say so' vein, but never bothered to look anything up for himself.

I originally thought I would be so relieved to get some kind of diagnosis that I would tell people but in reality, now that we are getting closer to that point, I keep my mouth shut. I don't want anyone to pre-judge him based on whatever their expectations might be based on their perception of what Aspergers is, so I let them make their own assessments of him. His behaviour is not bad at all, he is very respectful just sometimes very silly and immature. It is hard to know what to do for the best. Last year he played on a soccer team for the first time ever and there were a number of instances when he was clearly 'away with the fairies' as I call it, standing in the goal and not even making a move toward the ball, and his team-mates yelling and screaming at him. I hadn't said anything to the coach ahead of time about how he is, and in the end I never did, but I cringed inwardly when these moments happened and hoped and prayed that he wouldn't volunteer to be goalkeeper. Kids can be horrible, and parents on the sidelines can be horrible too. :(

It has dawned on us that DS may never be able to go to uni or hold down a 'proper' job. We considered buying a business that possibly DS could take over in the future. He is only 9 right now, plenty of time people keep telling us. It doesn't feel like plenty of time. :(

I have been expecting (some of) this for about 6 years but I still feel sad everytime that someone confirms that I am not imagining things.

That's another difference there, Rosie - my DS1 won't even contemplate a nursery setting. I liken his reaction to a panic attack. He HAS to get out. It's like he feels trapped. He will do ANYTHING (including anything dangerous - jumping from windows, crawling through fences, running into roads, making himself sick) to get out of a confinded area or environment in which he feels uncomfortable... Yet, put him in an open area and he'll happily chat along (and wander off) with anyone. Yet, your son can cope with nursery but he's clingy.

Momnipotent - Can I ask? your son can't write his own name at 9YO? Did I read that right? If so (an apologies if not), that makes him (again!) different to DS1 - who can read and write now... just not speak that well and not really express himself other than the 'here and now'

I think I'm only just understanding the enormity of 'the spectrum'. We have so much in common, yet our children are so different.

Rosie - I think it was you who said 'seeing it in black and white knocks you for 6'. I didn't feel like that the day we got our assessment but I do now.

I have been in a confined space with DS1 and DS2 - but because DS2 needed it. DS1 has zero empathy in such situations and just piled on the pressure, meaning I couldn't concentrate on DS2 (which I needed to do). It makes me sad to know that this is the start of a long hard road which affects not only DS1 and me, but also DS2

Sorry, just re-read what I'd written. We were waiting for a scan for DS2 as he bumped his head (all fine!) and had to wait in a (very small, very hot and very busy!) waiting room. DS1 nearly tore the place down!

Yes billy, he can't write his last name but that is due to his learning disability and not the ( potential) Aspergers. It's hard to see where one thing ends and the other begins. When DS was 2 we were actually in speech therapy due to a delay, and then he caught up and overtook where his peers are. Things evolve so the issues he had when he was younger ( delayed speech, really intense anxiety surrounding school) are no longer as relevant but other things like the learning stuff are more relevant now. Does that make any sense?!

Yeah was me, I knew DS had developmental delays before I got the letter the Dr had told us. As soon as it was in a letter form I freaked out and to be honest i am still full of worry.

I think the reason DS is ok with nursery is because we went 1 afternoon for a year and he had already met the teachers and knew the surroundings. Took 6 months for him to go and play and even then it was only a foot away from me. The last 6 sessions we had i would stand at the other end of the room whilst his teacher occupied him.
And im sorry you have a had a bad time of it today. My DD does get shoved to one side because DS takes up so much energy but we have started to address this and OH will take DS or DD and do something with whichever one he has. I also make sure DD and I have a girlie night once a fortnight where we snug up and do hair and make up and watch a girlie movie. She is almost 8 bless her.

Can i ask a dumb question about toilet training, my DS is 3 and a half and I cant ever imagine him wanting to go without a nappy. He was almost there in Octber yet he ended up freaking out about the change even tho we did it in a sensitive way and now he wont even contemplate nappy off time. Have tried the usual sticker charts and positive reinforcement but he isnt having any of it.

And momnipotent i think you make perfect sense. I guess having a child with special needs means we have to adapt as the revelvancy of issues change.

Hi Rosie Re. toilet training. My DS1 was, essentially, trained by DS2 who is amazingly advanced and ready for potty training before 2YO. So DS1 kind of 'got it' from DS2.

I know I'm lucky in the fact they are both dry day and night, but I also know that I have DS2 to thank for much of that!

FWIW, sticker charts / reward charts / bribery have never worked for DS1 (even though they work a treat for DS2)

God.. it's a minefield isn't it?

ANd, yes, momnipotent you do make perfect sense. I guess all parents have to deal with change, but SN seems to make it all so much more apparent.

why would they give him adhd medication for autism? (sorry, am just v confused - i've known loads of kids with asd or varying levels and none have been prescribed adhd meds without an adhd dx as well???... or do they think he has adhd too because of his erratic behaviour in confined spaces like nurseries, and energy levels?)

my main point was, none of the kids i know with a straight asd dx take any meds. the pnly ones that take meds have other specific difficulties, usually linked to anxiety, but are much much older.

i suspect it will be years and a specific problem (that isn't asd but could be related) before any meds are discussed.

you might want to post on the sn board, rather than sen. more traffic for asd.

Grrr....toilet training. Both of my boys were over 4 yo before they toilet trained, no bribes/sticker charts made the slightest bit of difference, but when they were ready they got it almost instantly.

Sorry, Outofbody, all new to me.

thanks for the advice.

I have no reason to think they will suggest meds. I just was saying that I WILL turn them down at this point.

When DS1 was younger and we were having issues with anxiety around school the counsellor/psychiatrist wanted to put him on Prozac. He was 5.

Mom - I have heard many stories (both here, elsewhere and RL) about meds being prescribed to toddlers.

I am not against it in the grand scheme of things. Just not right now. I have no need to change DS1's baheviour. I merely need to understand him and the way he works. The more I understand him now, the more I can help him in the future (if it turns out meds are required).

I am not interested AT ALL in modifiying his behaviour through meds at this time.

Thanks so much for the potty training advice, I will still try and gently encourage him to use the toilet. He did really well with a sticker chart at first but then he became bored with the idea and he really had no idea what a treat is so getting a car at the supermarket for doing wee wee on potty just went right over his head.

Billy, those were my thoughts too, that I wanted to understand him and teach him coping skills rather than drug him up just for the sake of going to school (he had other anxieties as well but that was the main one then). I took him out of school for 2 years and kept him home with me, and when he went back to school he was much more prepared for it, and so was I. I was blind-sided the first time, but now I know him better and he is able to express his concerns and we are able to talk about them. Now he is only stressed on the first day of school when it is all unknown - he doesn't know who his teacher is or classmates, where his classroom is, etc. Once he knows all those things we are back to smooth sailing. I wouldn't mind going back to that psychiatrist and showing her how well he's doing when I did the absolute opposite of everything she told me to do!