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

[mum2fred]

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?

Just wanted to say we are in same boat, we get diagnosis in July but effectively with prompting the speech therapist has said that ASD is the way its looking. Our son regressed at 2 (now 2.5) and things are still shaking themselves out so it started with loss of eye contact, leading us to things, putting our hands on things, stopping using his words but no repetitive stuff...then 2 months later he was going "come on mummy", wanting me with him all the time, eye contact was back, very affectionate ...forward another 2 months and he stopped saying come on and now just answers questions with yes and no, doesn't pull me to things as much, interacting with other people again (on his terms) but the repetitive reciting of songs and tv excerpts has massively increased; whereas at the outset we felt he didn't do repetitive play much at all. He has never had a thing about routines, eats well, sleeps well. So we have seen a variety of ASD symptoms over the past 6 months but not all of them all the time and the traits which have come to the fore have changed several times. I would also say that I get the impression doctors in the UK diagnose ASD very loosely (in the USA they are much more specific on the diagnostic criteria) and effectively they are just saying he's on the spectrum but they won't be able to predict which children will as you say move along the spectrum to the milder end when they diagnose at 2. From what I read alot of children diagnosed with classic autism in UK would be considered moderate, mild or PDD-NOS in US, and that in US classic autism would mean the non verbal, spinning wheel of a car or flicking piece of string for hours type child. Whereas here children who play appropriately but alone and unimaginatively are getting classic autism diagnoses. If you feel its a grey area then chances are you are saying your child isn't really that hard to look after, which is the same as mine he remains a happy, contented child with no more than the normal kind of 2 year old tantrums. Frankly this doesn't fit with a "classic" autism diagnosis but clearly my son is somewhere on the spectrum. A lot of what you read totally terrifies you, I have been to local NAS meetings and they were great firstly to hear stories of older children and see how far they have come; but also for info on services, local schools etc. I would recommend the first thing you do is get in touch with your local NAS. Also for books you can borrow some for free from CEREBRA. I have met 2 parents with children similar to ours recently, one went to a special nursery I am considering but was ready to move on to mainstream at reception and is now labelled gifted in his new school (although still autistic!); the other went through a list of typical symptoms and said at 2 her child did nearly all of them but at 5 now does hardly any (in mainstream nursery with 1:1). So there is plenty to hope for. You might also want to look at Treehouse website (its a charity that runs an ABA school in London and campaigns and has a very positive view on outcomes). They think 1:64 children in UK has ASD so that must mean alot of people who are out there functioning normally (but perhaps a bit geeky) were not diagnosed in the past. I would take the diagnosis as just a vague label for now and not a predictor of what the outcome is going to be, use it to get the help you need but don't let it dictate how you see your child. When I have mentioned how my child does not have a lot of symptoms eg he does understand the words he uses, his reciting is always in context and he acts it out so he understands what he is saying not just learning it in chunks etc my speech therapist says generally autism is always a mixed picture - which is very different from the classic autism description you would read about in a Lorna Wing book and shows how its just becoming a catch all term for anyone with higher than average autistic traits.I find it helpful to concentrate on what traits are actually causing a problem - for us its not using language and too much unproductive repetitive play - and just focus on what can be done to help with these aspects.

Hang in there, and give yourself a bit i time to digest the news. It's taken me about 5 weeks to stop panicking each time ds is doing something quirky as i remembered the paed 's word ' your son is on the autism spectrum'...
Even when us as parents have that awful niggling feeling that all is not well with our dc it's still a huge shock to hear it from the mouth of the professional.
Lots of mums here in the same boat.

once again, thank you all so much. most of our family and friends live in australia, and to be honest, we live a pretty isolated life in our little family of 4. This dx has left us at a loss.

im in no doubt he has learning difficultes but in many ways he doesnt display what i would have consdered obvious signs of autism. He eats well, sleeps well, has no obvious sensory concerns or unusual mannerisms. He is very affectionate (though with new people this takes time and familiarty).... He seems so very normal. One part of my brains fights the dx, but another part tells me that ths is denial and to accept the dx because elements of it does fit. He is very independant (though not to the point of exclusion - he is happy to have others involved in his play, but he decides what that play is) and largely (though not always) happy to entertan hmself. Sometimes he seeks our approval, a lot of the tme he doesnt. He has 200+ words, but few that sound exactly as they should and many that have very similar intonations. Its like he doesnt hear hard consonants? Hs receptve communication is great, i have no doubt he understands most of what I tell him.

It is so confusing. It is really such a grey area isn't it? nothing is typical. I think what im struggling with is that his dx was so clear cut, that he wasn't placed higher up the 'functoning' scale. To me, he seems he should be there. I cant understand how a doctor spends 2 hours with him (95% of which seemed to be questions) and is so emphatc. I dont know. Perhaps its denial? perhaps it is gnorance. Probaby both

So guess a question i have is that... will more obvious signs develop? The doctor said he would not 'regress' but im unsure what this means. Will he develop sensory diffculties? will attributes (eg a short temper or his fascination with water) get more pronounced? I realise these are elementry questions, perhaps missing the greater picture of things, but i smply dont know what to expect.

I was in a bookstore today and unable to locate some of the mentioned books and to be honest - i felt increasingly tearful as I searched. I couldnt quite face it today. Im trying to be brave and accepting and resolute, but i suspect that im greving a bit now, and time will sort that out.

thank you all or your kind words, stories and advice. it is of huge comfort to me and dh.

xx

ps. sorry if i go on a bit here. brain not grasping sitiation well, it's only been a day now.

pps sorry about the typing errors. a certan someone decided to pull up a large number of the keys on my laptop and i havent fixed them all properly yet.

(5inthebed - i am in southwark - peckham/camberwell area)

"I can't understand how a doctor spends 2 hours with him and is so emphatic"....

This is exactly my problem and criticism of 'the system' and I know just what you mean. Of course they are the professionals and you need to accept, to some extent, that they know what they are doing and what they are looking for. Equally though you are his parents and you know him, as a person, better than any doctor who has assessed him for 2 hours within a clinical setting.

On the whole issue of diagnosis and potential 'problems' around the methods and observations leading to DX's, lingle posted the attached document earlier today on another thread of mine - I have found this a hugely interesting and reassuring read, and thought you might also find it useful, particularly given that you have struggled to find some of the recommended books.

www.icdl.com/distance/webRadio/documents/10-10-2008.pdf

So overall - of course you might simply be in denial and I'm sure, as you say, part of you is grieving. That's only natural, and it's precisely where I am, too. BUT your concerns and confusion about the DX could also be entirely legitimate. It might be worth seeking a second opinion - if only to satisfy yourselves that yes this is the correct diagnosis - before you move forward. Seeking a second opinion is not automatic denial, it is simply a way of ensuring you take the best action possible for your child in the longer term.

Big hugs to you. This is all sooooo hard. If I lived any nearer to you I would come round with some chocolate and a nice bottle of wine!

OK sorry that link doesn't work - try going to my original thread where lingle posted the link in the first place. Go to Education / Special Educational Needs and a thread that starts 'Do you need a formal diagnosis....' (should be near top of list).

Sorry - can't get link to that thread to work either!!!!

Just to add your child does not have to be diagnosed to claim dla look up wwwfreetipson.co.uk dla so as said the sooner you phone and claimm the better you can get it backdated if they decide later rather than now.

Hiya, sorry didnt see this last week when you posted as was so busy with appointments. my ds was diagnosed autistic at 2 and a half too and he is 3 and a half now. In some ways i would say things have improved and in some ways they have got worse but i guess with any child things are like that.

I just wanted to post to see how youre all doing now a week on? It takes so long to come to terms with a diagnosis so it probably still feels raw but it does get better.

If you want to chat anytime or any help with dla forms my email is jennifer ault @ bt internet. com but without all the spaces!

Hope youre feeling ok, and remember youre a great mum and a diagnosis is no reflection on your parenting xx