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Diagnosis - please help

(21 Posts)
frizzcat Sat 06-Aug-11 01:40:46

so we had our paediatric appointment last week with ds - and asd was confirmed. All my worst fears come true - however I am having a second opinion privately (I don't think it will change the outcome). But I was so unimpressed by the doctor, she wasn't prepared for the meeting and spent less than 10mins testing ds. We were in the room less than 10mins and she just started talking about asd. I was quite shocked that something so life changing could be decided in an hour! What upset me even more is that she started saying dd who is only 4mths will have it too.
I feel lost I am devastated for my ds and now can't relax with my dd because I am analysing every bit of behaviour, which is what I have done with ds. Ds has no behavioural problems, in fact everyone comments on how well behaved he is, he is non violent and is very bright. His language is delayed and although he tries to socialise but can't keep up (this mainly happens in school, outside school he manages better) and so withdraws. Ds on the other hand although tiny babbles all the time smiles at everyone and is happiest around people - after last week I am begging her to roll so she meets her developmental targets.
I find the other parents at the school mean - they are quite happy to chat to me and pay me lip service of let's get together in the hols - they never invite us to the get togethers. I know another parent of an asd child but feel that she uses my ds as a yardstick she was over the moon with the diagnosis and said great they can live together?! My poor ds I have nearly absolutely lost the plot with him - you all seem so together and accepting and I feel lost like I'm not a good mum. Dh says it's just a word that ds will learn as he has always done but just not as quickly as others. All I want to do is to forgo all the memories and fast forward to the last year of my life to know that my beautiful children are okay - because no one can tell he'll be okay.....
Sorry for the deluge but I'm lost

EllenJaneisnotmyname Sat 06-Aug-11 01:47:10

Too late, have to go to bed, but I'll reply tomorrow.

Just one thing, though. Complete bollocks that your 4 month old will have ASD! It can run in families, but often it only affects one child, and girls are 4 times less likely to have classic autism than boys, 10 times less likely to have Aspergers. Please don't worry about your DD, it's unlikely. It's possible, but unlikely. I have 3 DSs and only one has ASD.

See you tomorrow.

frizzcat Sat 06-Aug-11 02:27:57

See you tomorrow and thanks for taking the time to write - you must be exhausted with 3ds's

IndigoBell Sat 06-Aug-11 06:23:00

What a weird and unprofessional paed.

There is a higher chance that your DD will have it - but she still probably won't. If she seems so 'normal' now, then there's an even greater chance she won't have it.

We may seem together now, but none of us were together in the early parts of getting a dx. All of us had to come to terms with it - there's a kind of a grieving cycle you go through.

But also, the prognosis for your son is much, much better than you fear. ASD is such a wide spectrum that it almost tells you nothing. My DS has Aspergers - and you'd hardly know he does. He has friends. He's happy. He's kind. And he's very academic.

So a diagnosis of ASD doesn't mean your DS won't be OK. If his main problems are social skills and delayed language, these are all things that can be taught, and that will improve with age as well.

utah Sat 06-Aug-11 09:27:19

my eldest ds had language and social problems and when he was seven I was asked to a meeting with teachers, salt and ed psych (who had witnessed my son while evaluating another child) to talk about seeing the paed and had I thought about autism. In my heart I knew they where right (and this was before my youngest who has non verbal autism was born) but my head and gut instinct said to give him time. He is now in secondary school and has a few freinds and is very bright, it would be very hard to have a dx now even if I wanted to as he has learnt to fit in this does make him exhausted but he is happy we have had the autism talk and he sees it in himself but would like to carry on. Primary school was awful regarding parents esp as the children seem to move on and forget about what has happened but the parents remember the strange boy in reception, the good thing is they loose control as the children get to the end of primary and secondary. Some of them parents from reception I know have to be nice to as they are the parents of my sons friends but deep down I will never forgive them. My son does not have many friends but the ones he does will do anything for him and accept him for who he is and respect that he likes his own space. If his dx is wrong he can have it removed when he is older but to be honest his dx will not change him or his needs.

intothewest Sat 06-Aug-11 09:48:51

Frizzcat- Sorry you're in such a bad place at the moment-

The diagnostic process varies,but I've never heard it being this quick,so I think you are right to ask for second opinion.(have you asked for this on the NHS first,so you don't have to pay ?)

I know of several families where the older child has been diagnosed as being on the autistic spectrum and the younger sibling is NOT affected.

The stage where you are is difficult. Lots of parents on MNSN has have been through it - The best thing I can advise is to find some support.The place where you are can be lonely.(ask at children's centre,or there may be some sort of support group in your area)

By the time my DS was diagnosed with ASD, I had been through all the stages and it was just a relief that it was over(took about 4 years!)

It is difficult-It can get better in time .TRY to enjoy your DD as she is and TRY not to worry about the distant future.If he has ASD it is good he has been diagnosed as he can get the help he needs smile

graciousenid Sat 06-Aug-11 10:05:04

frizzcat, it sounds awful & feeling lost is completely normal sad

Our diagnosis was similar - very quick, no formal testing - "just oh he has autism, is that what you were expecting?" It was incredibly traumatic at the time & I was raging that they were writing my lovely boy off before he was even three. With hindsight (it has taken 2 years to get to this point) I'm relieved that the diagnosis was so quick & not months & months of drawn out assessments & while I'm not utterly convinced by the diagnosis it works for us.

We have four children - and a very strong family history of ASD-type conditions - dds 1 & 2 are nt, ds1 has ASD & ds2 is only 2 months old. We've been told there is between 10-30% chance ds2 will also have ASD, I think the general population risk is a little under 1% but higher for boys.

Incidentally, they described my ds as being moderately affected, with very severe S&L difficulties (he was mute at 3yo & completely untestable) & learning difficulties. At nearly 5 he is ahead of his peers academically, in the normal range for S&L (though we have many more years of therapy ahead to approach 'normal' speech and is only very mildly affected by his autism. It has been unbelievably hard work to get to this point (& we still have major issues to contend with), but so worth it.

Vinniesbisqwits Sat 06-Aug-11 10:18:26

how awful an appointment and so disheartening that must have been your dd is unlikely to be asd or as slightly more so statistically obviously but why she even mentioned it ? i dont know ive also 3 dcs two boys and one girl only one DS3 is ASD so please take no notice.
On the other hand if your not happy with the way it has been carried out it is perfectly acceptable to get a second opinion or get a private dx.
You are not a bad mum at all , a bad mum is one that ignores her dcs difficulties and does nothing , you have sought help and advice, and now its time to grieve as its like a loss expected or unexpected you still will take time to get over what your LO has been dx with.
take time out to digest the information, and get lots of reading material on it, Tony Attwood books are good , Wendy Lawson (herself autistic) cant eat wont eat by brends legge (hers dc is autistic) and my ds3 personal favorite All cats have AS , such a lovely boo to help him understand 9why me) as hes always asked this since about age 8.
please try and relax and (stupid emoticon) not worry , were here to chat to if you need extra support, and there are lots of groups ect that can help along the way .

StarlightMcKenzie Sat 06-Aug-11 10:48:42

My 4 yr old ds has classic autism. My 2 yr old has whatever the opposite of autism might be. She is socially devious and manipulative and can get round any problem through negotiation and at times, emotional blackmail.

Not only does she not have autism but she never leaves ds alone, constantly challenging, annoying and forcing him to play with her. Our house is noisy and there is a lot of fighting, but my two adore each other and are both lost when the other is missing.

Younger siblings are the best therapists, and odds are overwhelmingly in your favour that she does not have an ASD.

graciousenid Sat 06-Aug-11 11:03:00

"Younger siblings are the best therapists, and odds are overwhelmingly in your favour that she does not have an ASD."

^^ Absolutely!

Vinniesbisqwits Sat 06-Aug-11 11:07:14

my eldest is like this with DS3(ASD) there fighting 24/7 but when DS1 is away DS3 misses him like crazy , if you ask DS3 he says he hates DS1 but is like his shadow following him everywhere and copying him if DS1 is away DS3 says where is he every 5 mins and i have to repeat hes staying at a friends for a sleepover , he has only lately after being at SS started hugging him occasionally (DS1 doesnt like it as lads of 15 dont generally hug often unless its a girl of course) [grins]

Mitmoo Sat 06-Aug-11 11:09:58

But I was so unimpressed by the doctor, she wasn't prepared for the meeting and spent less than 10mins testing ds...... What upset me even more is that she started saying dd who is only 4mths will have it too.

I have no idea who you have seen but IF that is how quickly they've diagnosed a child and said the baby will have it too, then you need to report them. They are not fit to be practising.

colditz Sat 06-Aug-11 11:12:12

Your doctor has outright lied to you.

Ds1 has ASD - Ds2 is perfectly normal.

colditz Sat 06-Aug-11 11:12:52

And yes, I cannot imagine how unsocialised Ds1 would be if it were not for his loud, demanding and hypersociable brother!

EllenJaneisnotmyname Sat 06-Aug-11 11:20:45

Hi frizzcat. I'm glad you've already had lots of advice. My take on it is similar. You should get your second opinion, your Paed sounds awful. There is an increased risk for your DD, but that is all. And being a girl is also good news as it reduces that risk again. NT is neuro typical, 'normal' I suppose, but a nicer way of putting it. Two of my 3 DSs are NT, although DS3 is a bit quirky! grin I spent all of DS3's babyhood worrying about him sad but it was soon obvious that he was fine, lovely in fact, just a bit quirky as I said.

I think at a second opinion or appointment you should get yourself prepared with a list of questions about what to do next, about your DD etc. This time it won't be a horrible shock so you'll be in a better frame of mind to take things in and ask what you want to know.

It is a grieving process, you are grieving for the child your DS isn't going to be, so allow yourself time. It was 8 years ago that DS2 got his DX, but I can remember my feeling like it was yesterday. It hurts, but it does get better. What I usually say is that this DX hasn't changed your DS. He's still the lovely boy you described, it hasn't changed him at all.

I also found it best to concentrate on the next target, the next thing to be dealt with rather than looking far into the future. I only looked about a year ahead. But if it is any comfort, my DS2 was non verbal at 3.6 but has just passed his Y6 SATs and is off to MS secondary in Sept.

I also found that the other DC in his class were very tolerant and helpful once they had had a talk from the Advisory Teacher for Autism about invisible disabilities. It's not for everyone, but something to think about. The parents were generally nice, but not many playdates or parties here, either. sad it is nice that there is another child, even if the mother is a bit OTT!

How old is your DS? The next thing is what support is he getting at school? Is he on school action plus, does he have an IEP, or does he have a statement. If not, perhaps you should consider requesting Statutory Assessment. This might be a discussion for another day, but come back and ask about it whenever you want.

You've found a great resource here, lots of people who have been along the same sort of journey, some at a very similar stage to yourself, some further along. I hope you find us helpful. smile

frizzcat Sat 06-Aug-11 13:07:34

Firstly thank you all for writing - you've actually made me feel hopeful and believe me at 1.40am I thought I'd never smile again.
I read your posts and marched into my sons room where he had all the cuddly toys out and talking to each other (pead said he had no imagination) scooped him up and gave him the biggest hug - he was so chuffed because generally mummy is cross or worried or sad ( his words). Some of you have asked me questions so I'll answer. Ds is 6yrs old, I am going through the process of statementing and he has just been awarded 19hrs. When he was in reception he was just left to do what he wanted - they didn't even bother to do an end of year report. So I went into the school read the riot act and threatened to remove for home schooling - that seemed to get their attention and they paid for a lsa out of their own budget. Btw ds also had a hearing and sinus problem that wasn't discovered until he was 5yrs. Between the op and the lsa his progress in one year has been staggering - to the point where I have let him go to a drama club so he gets used to more social environments ( is that a good idea?). All good you are thinking except for the senco who has basically made ds out to be worse to get more money. Luckily I have managed to have a fantastic relationship with the lsa and know this is not the case. They also keep having the lsa remove him from class or activities when he isn't even doing anything - other children thinks he's being naughty and ds gets upset because he is singled out and so anxious that he us not seen as naughty. So I have asked to see the lesson plans and asked when he will be segregated and why in the hopes that it makes it more difficult for them to exclude him when they feel like it because it's affecting his confidence.... Is that the same as you lot?

EllenJaneisnotmyname Sat 06-Aug-11 13:37:42

Most of my DS's support is classroom based, with a few 1:1 sessions for specific difficulties like inference. He had a small group activity for speaking and listening as well in y1 and 2. He has 15 hrs plus 5 for lunchtimes on his statement.

You will have to explain to the SENCo that removing your DS from the class doesn't reduce his stress levels, it actually increases them. You may have to work together to find strategies that will be effective as your DS won't be allowed to disrupt the others for long especially if he has a 1:1. It's just finding what works best for him, being proactive by anticipating his anxiety rather than reactive.

I think the SENCo has served you well reporting your DS's worst days as getting any support is difficult. Please see it as a positive thing rather than negative.

Any extra curricular activities that your DS is happy to do are 'a good thing' I think. Pushing him slightly out of his comfort zone without a meltdown or huge anxiety can only help him. That's my opinion, and these clubs are easier to start younger when differences are more tolerated by new children. My DS did Beavers and Cubs and went on camps and sleepovers. He's now in Scouts, but rather reluctantly. He's happiest at home on the PC!

Gotta get lunch now.

coff33pot Sat 06-Aug-11 13:39:11

What a horrible and tactless Pead! Seeing as she was not assessing your DD she had no right to tell you she would also have ASD. I think you are right to get a second oppinion at least to be able to discuss fully with a proper proffessional any therapies that your DS might benefit from should they also agree the diagnosis.

I have 3 DCs and only my last child is being assessed for Aspergers. I myself to be honest am more of an undiagnosed Aspie. The traits my son has are similar to mine I hate crowds, cant stand shopping, freak out if my DH organises a night out on the spot as it is NOT a nice surprise, sociable only when I want to be, only I am older and have learnt to deal with life and can also hide it very well. ie I dont have tantrums when in a panic but shut myself away instead. My brother is dx with chronic OCD and even my mother has admitted when researching with me for DS that we all grew up with querks and maybe she should have done something about it. That said both myself and my brother have married, had children and ran our own businesses so life doesnt end once a diagnosis is made.

As for being together and accepting, trust me I am not smile You have good days and bad. DS is still being assessed and it hits me everytime I get a letter in the door. This is not what I want for my son, I fight a battle inside all the time and its like I have lived a double day the amount of energy it takes to keep it together and this is not what I planned for DS. That said it is not the end of the world, I am doing ok and so will he.

None of this has changed who your lovely son is, he is the same boy and speach and social issues CAN be taught. He has every chance of leading a perfectly normal life and the more mature he gets the more he will be able to understand his issues and deal with them in his own way.

And as for other playground mothers........................I dont do friends and dont mix in anyones houses. I guess thats the aspie bit in me but it is a good bit to have as I have a real brick wall around me that they cannot get through so nothing hurts and its the best defense to have when your child is different.

frizzcat Sat 06-Aug-11 22:29:02

I've actually had more information and advice from you lot than from the whole league of professionals that I've dealt with. So I'm going to stop worrying about dd and enjoy her and more importantly start try and enjoy my ds - who I'm missing out on and I know my stress and worry makes him more anxious. I know this is a long road and there will be low days but I'm going to try and focus on the positive and post his successes as much as much as I post the negative.
For all of you I can't thank you enough for responding, I feel like a brick has been lifted of my head - I just hope I can be as fantastic as you lot are (and you are) and help someone as much as you've helped me

EllenJaneisnotmyname Sat 06-Aug-11 22:49:23

That's a really lovely post, Frizzcat. I'm so glad we've been helpful to you. Do stick around, it can really help people to talk with those at the same stage of DX and statementing etc. smile

coff33pot Sat 06-Aug-11 23:28:04

smile You are welcome smile

There are a lot of people here that have helped me with their knowledge and experience. Stick around we love to hear good family stories and have very broad shoulders if you need support on a down day x

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