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Autism - where do I start? 2.5 y.o son diagnosed today....

(34 Posts)
mum2fred Thu 04-Jun-09 15:11:27

Talk about a slap in the face!! DS1 speech has been a bit behnd, and he does have a few atypical behaviours (eg. repetitive play with water and wheels etc) but nothing too unusual or concerning. We've been in hte system a short whle waiting for proper diagosis, but to be honest did not expect such a immedate or definite ruling. He ticks a few of the boxes but not all, so I guess we were hopeful that there was some sort of grey in the matter...

DOctor seemed to hone in on fact that he doesnt really point at things and doesn't pick up toys and show them to me (that sort of thing).. but he has no routines, no real fascinations (beyond water) engages ok (although only when its something that interests him, of course). Are these things that come with age? I realise that 2.5 is a young diagnosis...

...anyway - in a bit of shock. been given all these leaflets and recommendations and told ot enrol him in nurserty to get private speech therapy etc. etc. after hte sentence 'I have no doubt your son has autism' the rest is a blur.

just feel all over hte shop. in tears on moment, resolute the next.

dont know where to start or what to do.

does anyone have any books they could recommend for someone like me?

mummysaurus Thu 04-Jun-09 15:19:18

Don't have any specific advice but wanted to post some support. We're in mid diagnosis for our ds 3.5 and three weeks ago were told he had global delay. i'm still waiting for the report(!) and like you I couldn't take in very much info.

Of course you feel knocked for six so please be nice to yourself. Make yourself a cuppa and treat yourself to something nice and I'm sure someone will be along with some advice.

I would say though that if the diagnosis really doesn't seem to fit then you should not be shy about asking for a second opinion

busybeingmum Thu 04-Jun-09 17:06:38

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ICANDOTHAT Thu 04-Jun-09 17:11:28

It's a horribly lonely time and it was the only time in my life I truly felt like an island - even if I did have a dh for support, it was my 'baby' they were referring to. I'm so sorry you feel like this and I don't have experience of an autism dx (my ds is adhd), but I remember the very raw shock the moment the words were uttered - cried for weeks. I would say take all the support you can get from partner, friends, relatives and professionals - do not attempt to handle this on your own. As for 2nd opinions, I also went down a private dx route about 3 months ago and the outcome was same dx, but 'mild' - makes no difference to my ds or us really, still the same lad with the same issues.

Good luck wink

rosie39forever Thu 04-Jun-09 17:26:25

I remember that terrible feeling well, it will take time to get your head round things. It may not feel like it at the moment but you are in a really good position, many studies have shown that the earlier you can get a dx and get therapies under way the better chance your Ds has of copeing with asd. I know its hard at the mo but try and be possitive and remember that children change very quickly at that age and Dx can always be changed as he develops and grows. (sorry about the spelling, trying to cook and type at the same time)

lingle Thu 04-Jun-09 17:56:24

Sounds like a crap day.

Someone has already mentioned "More than Words" (currently being sold at just over £30 on and "It Takes two to talk". Both books are so beautifully written. They are completely free of lectures, depressing anecdotes, milestone charts or other similarly repulsive phenomena. They just show you how to pick up the tools and get on with the job. "It Takes two to talk" in particular can be used even by disbelieving grandparents, etc as it does not mention the word autism at all.

For a more global overview, I heartily recommend Stanley Greenspan's "The Child with Special Needs." It has taken me a year to find this book. Finally, a world-leading expert on autism who actually understands that the parent not the doctor is the expert on their child - really empowering yet practical and just great stuff. His key word is "woo" - you hang out with your child and "woo" him into greater communication skills.

good luck and do stick around as most people seem to find they get their best info from this forum.

PipinJo Thu 04-Jun-09 18:07:28

Message withdrawn at poster's request.

sickofsocalledexperts Thu 04-Jun-09 18:42:06

Agree with all Pipin Jo says, and I too remember that feeling of how your life will never be the same again once they speak the words. Only thing I'd add is that we tried every teaching method going, and the only one which worked - and the one with the best research behind it - was ABA, or applied behavioural analysis. It sounds big and tricky, but actually it's just common sense and it got through to my DS in a way the SEN nursery didn't (he's now at mainstream, with a helper, and reading and writing and talking and all those things that I once thought he'd never do). And yes Pipin Jo is right about getting the DLA money straight away, as they back date it to when you first apply. And go for a statement too. I have a pal who I first met on mumsnet who is in exactly your position (her son is also just diagnosed, at 2 1/2) and she recently go awarded DLA and is close to getting her statement, plus is using a form of ABA called Verbal Behaviour. The other thing I'd highly recommend, which you could do , is get the Baby Bumblebee DVDs - the numbers one particularly is great.
And before I carry on bombarding you with stuff, just one other thing. My boy turning out to be autistic has taught me a deeper love than I thought possible, as I feel like a tigress who would do literally ANYTHING to protect her wounded cub. I couldn't love his chubby little cheeky face any more if I tried! I bet you feel the same about your little one. He sounds pretty mild, so I'd say the chances of a good outcome for him are high. Good luck!

Davros Thu 04-Jun-09 18:52:41

When you are ready look at the NAS website. Lots of books and resources, info sheets and local branches to network with other parents when you are ready. Plus Earlybird scheme. HTH.

Peachy Thu 04-Jun-09 19:01:38

mum2fred- hgs, commisearations fro the chock yet congratulations for having managed to get your son diagnosed so early, that's a wonderfully good thing

Don't know what to do? Do nothing. just for a few days, a week. let it sink in, get beyond the first flushes of what is essnetially a form of grief. Once you feel able, contact the national autistic society and get on their list for the help! type courses (is it Earlybird for littles?)

As for the rest, tailor it to your family; nursery si great for some but ds3 (5, ASD) hated it- ds1 (9, as / hfa) liked it though. private SALT is good but fight for NHS SALT as well- ytour child should be getting liong term support.

But right now, pour yourself a glass of wine, make a cake, read a book or whatever helps you relax.

Peachy Thu 04-Jun-09 19:04:35

(Oh the one thing to do yes is call DLA, as they date the payments from day of call)

Remember you can order books in rom your library for a few quid, you can always buy them ater if you like them

mum2fred Thu 04-Jun-09 20:30:24

thanks everyone for all your knd words. what a shocking day. bit devestated.

feel like im on automatic. dont know how i managed to get my boys fed, bathed and bedded just then.

going to have to re-read through all of this more carefully when my brain is working as there is so much good stuff in there (though might have ot get out my acronym dictionary!). thank you all so much.

love my boy more than words, but feel so worried about his future. about him being happy. just gutted that his life has ths complication in it.

he was diagnosed with 'classic' autism (normal intelligence) which i htink is what suprises me so much. I felt that he was so normal in so many respects that f he was going to be diagnosed, t would definately be at the high-functioning end of hte spectrum.

but there is a chance that with good help and the early intervention that he can move towards ths end of the scale? im not sure, im just learnng about all of this.

am already in the nhs system for speech therapy (though unsure when the next meeting is... they told me to call if hadn't heard in 4 months!) Will def try to get private speech therapy. Any ideas where to start looking for one for SE London?

Argh. Brain. So hard to come ot terms with.

thank you all so much, we honestly don't know anyone with autsm, it feels quite lonely nad definately foreign. thank you.

mum2fred Thu 04-Jun-09 20:34:17

also - in hte white noise of hte aftermath of diagnosis, the doctor said something about autism being genetic and future children having a 1 in 20 chance of also having autism? My 10m.o ds2 is a very different baby from ds1, but stll worried.

(mind going crazy. i know these things alsways seem worse when you first hear, and nothing has changed nad hes stll as wonderful as always nad
it'll get easier... etc. etc... just hard to get brain convnced of that right now!)

amberflower Thu 04-Jun-09 20:38:14

Hi mum2fred,

First of all I wanted to send you a big virtual hug, as I can completely sympathise with you and know exactly where you are coming from. We're awaiting a formal report for our DS, who's nearly 5, following a verbal diagnosis of mild autism after a multi-agency assessment. The first few days after the diagnosis passed in a blur of stress and tears and I can absolutely agree with what others have posted - take your time and treat yourselves kindly. It's a horrible, isolating, frightening shock and you need a bit of time to come to terms with things.

Having said that, though, I guess I have one real question for you - what do YOU think? Do YOU believe he is autistic? You're his parents. You know this child. From what I've read on here and elsewhere, the 'classic' parental response to a correct DX of autism seems to be *"I'm devastated, I love him/her to pieces but I'm so worried/scared for his/her future, I want to do the absolute best for him/her that I can - ^but you know what, in my heart of hearts I kind of knew this was coming, I knew something was 'different' or 'not right' about DS/DD^"*. Is this you? Or not?

So once you have had a few days - even a week or two - to let the idea sink in, take a bit of time to decide whether this is a diagnosis you actually agree with. As busybeingmum points out, it may be that with this in your mind you now start noticing things you might have not paid attention to before, and start to realise that perhaps the DX is entirely correct. On the other hand, you may reflect on things and think 'hang on, I really don't think this is right'. You may find yourself watching him and not noticing anything different at all.

Of course, the behaviours you describe that the doctor has honed in on are certainly autistic traits, but virtually every child will display autistic traits at some time or other. Your DS is ever so young still. I've been doing a lot of research since our verbal DX, and at one point spoke to a lovely outreach worker from a local school for autistic children and she commented that she could go into any primary school classroom and probably identify 'autistic traits' in most of the children in there - but that doesn't mean that said children would be 'autistic'. I have a nephew who was obsessed, at your DS's age, with lining up cars. I also have a goddaughter who used to climb in and out and in and out and in and out of her paddling pool in the most ritualistic way you can imagine. Neither child is remotely autistic, even though they displayed, as most children can do from time to time, autistic traits.

With hindsight you may of course come reluctantly to the conclusion that, as hard as it is to take on board, your paed is right, and if this IS the case for you then the good news is that with the DX in place you should hopefully be able to access the support your DS needs, as well as heaps of emotional support and advice for you from fellow mumsnetters. BUT if, having taken time to reflect, you genuinely feel that this diagnosis is not quite right then please don't be afraid to seek a second opinion. The National Autistic Society will confirm, you are perfectly within your rights to do this. Even if the second opinion does actually confirm the first one, you'll at least feel that you did everything to ensure a correct DX rather than accept the word of one doctor.

You will probably have gathered by the general tone of my post that we are not happy with the DX our DS has been given - hence why I am urging you not to simply accept yours if you don't believe in your heart of hearts that it's correct. I won't go into specific detail about our DS's situation because that's a whole separate thread in itself and quite frankly I have wittered on too much already! But in a nutshell we will be seeking a second opinion. This is because after a good month of reflecting on our paed's comments, we genuinely do not believe the DX to be correct. We're not in denial, we're not ignoring glaring behaviours, we are prepared to accept ultimately that he IS mildly autistic should a second opinion confirm it - but we are not confident the initial assessment process was either robust or rigorous enough for us to believe in its stated outcome. And I should also add that having spoken to a couple of special needs professionals about it they, too, have strongly urged us to get a second opinion.

Sorry to have posted such a long message. But I hope this is of some help. Take care of all of you, and keep posting.

busybeingmum Thu 04-Jun-09 20:46:41

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lingle Thu 04-Jun-09 21:21:44

Amberflower, I don't want to hijaack this thread but have just bumped yours from last week as would be interested to chat further.

mum2fred Thu 04-Jun-09 21:45:52

Hi i'm mum2fred's partner and i just read all of your comments above. i just wanted to say thank you on behlaf of my family that you have all taken the time to help us. It is uplifting. thank you. I found out yesterday that my 35 year old male cousin with 3 small babies died yesterday of cancer. so it hasn't been a good couple of days! In a funny way what just happened to my cousin puts the autism into perspective and like you say he is the amazing little boy that we love so much that we had this morning. he will be amazing whatever. there are plenty of worse things that can happen. the autism from what i know only effects a very small aspect of being a human. I can't imagine our fred being anything but a fundamentally normal kid - getting and giving the vast majority of pleasures. thanks again.

busybeingmum Thu 04-Jun-09 21:59:05

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HelensMelons Thu 04-Jun-09 22:17:51

Hi Mum2Fred and Dad2Fred

My DS2 (8) was dx with an autistic spectrum disorder in Feb 07. I have 2 other dc's, DS1 and DD3 both nt.

There is a lot of help, advice and support on this board and I have found it a great lifeline, particularly, in terms of support.

Be kind to yourselves x

5inthebed Thu 04-Jun-09 22:47:20

You've been offered some really sound advice on here. I wish I knew about MN when my Ds2 was dx.

He was about the same age as your DS when he was DX last year. As soon as they DX him, I just had visions in my head of him sitting in a corner withdrawn from the world and rocking. Sounds bizarre, but that was my impression of autism, as never come across anybody who had it. I now know this isn't the fact!

My Ds2 has come so far in the past year, and yours will to. You will look back at this period in your life this time next year, and think "Gosh we have come far".

What area do you live in?

busybeingmum Thu 04-Jun-09 22:49:29

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troutpout Thu 04-Jun-09 23:28:37

Mum2fred and dad2fred
I have nothing much to add to the wonderful advice you have already been given. Just wanted to say 'welcome' and 'stick around'
You have come to the right place for a wonderful source of information and support.
Give yourself time to come to terms with your day
He is the same boy he has always helps to remember that i think

PipinJo Thu 04-Jun-09 23:31:42

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Dodgypins Thu 04-Jun-09 23:53:52

Hi mum to fred.

I can feel that lurch in my soul when I read your first posting. I remember exactly that seesaw effect.. even though we KNEW something was awry. I can't say it is only temporary.. I can only say as time goes on it gets to be a rare experience.. just pops up at unexpected moments. Most of the time though it will go on getting better and better.

MAD?? Well probably.. but it helps to be a bit mad.. helps to "see" things as your child sees them.. and that helps to understand why he reacts the way he does sometimes. But you are spot on. He IS still the lovely little lad you love and who loves you.. and will grow up to be an amazing person.. not least BECAUSE you got this difficult but very valuable early diagnosis.

Use all the advice offered above.. specially the bit about the NAS and the Earlybird course.. excellent. Read the Tony Atwood book.. it about Aspergers but I find it very helpful about loads of things. I also like the Lorna Wing book.. have a look on the NAS site and you will see all of the them. The Transporters Website is very useful for helping with facial expressions.. and get a simple book about social stories.. these are a really valuable tool for parents and professionals alike.

Most of all.. believe in your son and in the future. Today I wrote a letter of application for my son to take part in a project for young people on the Autistic Spectrum to create a show to be put on in the West End about what it is like to be a young person like them. Seeing it all written down brought tears to my eyes.. he has done so many brilliant things, made so many successes.. and none of them were easy for him.. so I am so proud of him.. and really admire him for being the determined, enthusiastic, positive soul that he is! I just know you will be feeling the same in 15 years or so.. and hopefully many many times along the way!

God bless!

PipinJo Fri 05-Jun-09 00:30:31

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