Our little boy received his diagnosis today :(

[runikka]

Hi there

Havent posted for a while as life has been quite hectic. Little Daniel had a follow up appointment with the paedetrician today and within 20 minutes she had confirmed he has a social communication disorder and is somewhere on the mid-high end of the autistic spectrum. The diagnosis isn't a shock but the speed of it was. It was only his second appointment plus one to the speech therapist and his eye contact and interaction has definitely improved since his first one.

Today though he wasn't playing ball and didn't respond to his name or the toys too well. A bit numb at the moment because on one hand we are getting somewhere but on the other hand...I just dont like the word autism! We have so many questions now that no-one can answer...sigh!

Sorry for ramble. Thanks for reading!

Kirsty

sorry to hear how you are feeling - i felt the same - pleased we had the answer but horrified at the same time and lots of impossible questions that would require seeng into the future.
it's10 months since my ds's dx and now i try to say 'autistic' as much as possible - it gets less painful that way. big hugs to you

Runnika I'm sorry you're going through all this. xx

Good news about the progress he has made between appointments.

Hi there, a dx can be a very difficult time full of mixed emotions, as you say they are very Positive because it will mean your little boy gets the help he needs, he is still the same little boy but I think it's natural to feel a little sad too.

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{{{hugs}}} - I can remember feeling like this too. Of course its a positive thing to get a firm diagnosis, but its natural to wish you'd not ended up on this path in the first place. You can start to move forward now though.

Just wanted to add the same as everyone else really. It's hard when there are 'question marks' over your child before they are formally dx - I remember hoping against hope that DS2 wasn't autistic though I knew in my heart he probably was.
DS2 never plays ball during appts either - he's much better when assessed at home.

Hi runikka, just wanted to add my support. My ds was diagnosed with AS and ADD last October. It was no surprise as I had known there was something wrong for several years. However it did hit me harder than I thought and I was quite depressed for a few months even though I was the one who had pushed for the diagnosis.

Ultimately it is best way to obtain the support my ds badly needs to achieve his potential. I think there are many more people around with an ASD than are currently diagnosed particularly in the adult population. At least our kids are hopefully going to get more help so the outlook should be better for them. I have found that ds has good days and bad, sometimes you think there is not much wrong with him, othertimes he behaves so strangely you can't see him surviving in the outside world... Still I think the extra help he is getting is all to the good even though I have had to have major arguments with the school about it. Be kind to yourself and take the time you need to come to terms with things. Keep posting I have found it really helpful to chat to others in the same boat.

Hi there

Many thanks for your replies and words of support. It is greatly appreciated and comforting to know we are not alone.

One thing I having difficulty coming to terms with is the possibilities of our little girl also being on the spectrum. she is currently 10 months and showing no signs but having said that neither did Daniel at this age.

The paed says she has a 1 in 20 chance, less so because she is a girl but we wont know until at least 15 months when she should start pointing etc.

Dont get me wrong I love my little boy to bits and his diagnosis just strengthens that. We'll do whatever we need to make sure he is happy and developing. He is my little star but it is does terrify me the road ahead for him (currently the blood tests for Fragile X) and the prospect of our little girl also being diagnosed is such a worry. I just want to enjoy them both whilst they are small.

Has anyone in a similar position at the moment and am I worrying unnecessarily.

Sorry you are going through this, runikka - it must be really hard for you.

I can understand how you are feeling right now. My DS1 has his been referred for a developmental check, and much as I want the extra help for him, I am getting myself so upset about the possible results of this.

Glad to hear of your little boys improvements.

Aww Runikka...it's hard isn't it. We want answers and we come to terms with seeking them but when we have them it's so raw all over again isn't it?
I haven't even got my answers yet...but i know i will feel exactly the same
Hugs to you

Runnika, sorry to hear that you are going through all this.
My DS has AS, and last year we were told that DD is most likely on the spectrum.

Its very hard, especially when you are told a 2nd child is on the spectrum.

But, you will come to terms with it and cope, ive only just started to see past the ASD with my two and see them for what they are 2 beautiful children with their own unique/special little quirks.

Hope you are feeling ok

jen
xx

Hi there. Its been a while (18 months) since our boy was diagnosed at age 2 and 5 months. Even though i intrinsically knew he had autism, the shock of someone else actually "telling" me he was on the spectrum was another matter.

If you are like I was then, you probably are having a hard time seeing through to next week much less the future. But please trust me, things get "better". It takes time to absorb the diagnosis and adjust to the word. However, i want to pass on to you what i have learned. There is no one "autism" and your child will be totaly different to my child or any other child.

the worst thing i did after my child's diagnosis was to visit the parent of a teenage boy who had autism. This parent was there for "support" as part of a support group. This parent's child did not speak, and was not able to walk very well and had all kinds of physcial problems. I went away from that meeting feeling horribly depressed, thinking that THat was "autism". To date, now 18 months on, i have not seen one child like mine who is autistic. Its 2007, and there are so many interventions and biomedical treatments for autism. I would suggest you make time to do all the research you can into the medical aspects of autism, the physical similarities that our kids have, and the reasons behind those similarities, and of course the treatments for them.

More and more parents are waking up to what was a big secret about autism, basically that it is often very "treatable".

Please watch out for the commonalities your child might have with other autistic children in terms of his health, his gut and immune system. Cant stress this enough and there is so much help out there. Since we started biomedical interventions with our boy, he is a changed little person, so with it, and now he is talking a storm. I am not saying my boy is cured, but he is not the little boy he was 18 months ago.

Something to think about. There is so much hope now for our little ones in terms of them possessing the abilities to lead independent lives and happy joyous lives.

Please keep us posted and dont get too caught up with paediatrician's testing. I always feel like crap coming out of the paed's office. My boy doesnt like it there and always performs his worst, making her tests come out terribly low. No test can "mark" your child, as this or that. A child must be looked at wholistically, not just via a test in a very strained environments.

Hi
We have a little boy diagnosed with global developmental delay, the diagnosis was poorly managed and as it came after only one appointment with the speech therapist and one with the paediatrician i felt they were way over the top and cross that they were making such big statements when they had met him for such short periods of time. We were lucky to be referred to a 'service co-ordinater' who was fantastic and got to know us, helped us get DLA and most of all listened to me when i was working my way to something akin to a bereavement. We also had a great portage worker who I felt really got to know him and was positive & made me feel that the diagnosis although blunt was about right. my DS was tested for things such as Fragile X but the cause of his problems is still unknown-something which has positives and negatives.
I have 2 younger children and watch and wait, so know how that bit feels too.
Go easy on yourself and Give yourself time to work through your feelings about the diagnosis. It does feel less raw with time.

Hi Kirsty, just a quick note as I have a screaming baby in my arms - just wanted to send you some positive vibes as we were in your situation last year.

I basically don't buy the view peddled by the NHS of autism as a 'lifelong disability', and I refused to attend the support (=whinge)group meetings they tried to send me to. DS is doing great because of a few interventions that we have set up. CAT me and I can tell what we are doing. There is hope. I find it DISGUSTING that the paed is speculating on the possibility of siblings being on the spectrum, as coming to terms with one diagnosis is hard enough (ours did the same, it sounds llike they have some kind of instruction manual! Forget the fragile x as well for now. I told our paed where to stick her brochures).
xxx

Kitegirl is right, i got "fragile x, muscular dystrophy and prader willi syndrome thrown at me during dx appt.)

These paeds are made of steel, and i think they like to make you feel as bad as they possibly can to begin with because I think they want you to face "reality". Their reality about autism is pretty limited and as my own paed hasnt got a clue what its like to see a child getting further away from his dx of autism, i dont even talk to her much anymore.

We had to beg, and i mean beg for a diagnosis, then when we got it, this "lifelong disability" for our son, we got nothing, nada, zip. I mean NOTHING.

Thankfully we knew that there was so much to do so we hit the floor running. I dont even spend my time on UK info sites much any more. There is so much research going on abroad and in the USA. Its there for all to see, including the paeds, but they dont want to admit what is really going on about autism. Its a "medical" condition and i will always believe that, and it can be greatly helped to the point of recovery, i.e. losing the diagnosis, with the right help, most of which you wont get here in the UK, unfortunately. YOu wont even get SUPPORT for it, over here. We are so behind the times.

anyway check out the latest edition of "discovery" magazine (april 07) Nice large article on autism and the gut/immune system, pointing to the relationship between our kids being immuno compromised due to vaccs and environmental toxins.
check out "Autism, its not just in the head"
at : discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head

This is a great boon to the biomed moms and dads and doctors out there. Finally the scientific media is taking notice that autism is NOT down to a gene or that autism is "forever".

Please PLEASE do your own research and make friends with parents who use biomedical interventions for their children. This is the way of the future, for informed parents.