Finally got a diagnosis!

[LizK]

Took Adam to his paediatric appointment today and the paediatrician has now officially confirmed that Adam (4yrs) is autistic. We were going to ask for a formal diagnosis to be considered but wondered whether the paed would want to wait a bit longer as Adam is quite complex especially as the Ed Psych was very reluctant for Adam to be diagnosed and when I saw her 2 weeks ago was even querying if ASD was the correct diagnosis . However the paediatrician was the one to bring up the issue of going ahead with a diagnosis before we even mentioned it. We are fortunate to see a great paediatrician who has an interest in ASD in youngsters and although Adam might not fulfill every single minute criteria he felt he had enough predominant features to warrant a diagnosis. He said that bright chidlren or those with some degree of hyperactivity can mask their symptoms hence why Adma appears more complex than he is but just because he has learned a social rule doesn't mean he's not got autism. He thinks Adam is on the 'milder'/higher functioning end of the spectrum but we are aware that is a fairly fluid state that can go either way over time.

 

I always thought I'd be devastated to be told that a child of mine had autism but have to admit my initial reaction today was of relief, sort of happy even. Does that sound really awful? We've been concerned that Adam has had some form of autism for nearly 2 years and have done our grieving in bits and pieces during that time. He's still the same boy that he was this morning or last week, nothing has really changed. I do feel a little sad and shellshocked this evening and maybe do need a bit of time for things to sink in but overall and pleased with how today went. Relief is my overwhelming emotion, relieved that it's finally been confirmed, that today was so straight forward and that the EP won't be involved in the diagnostic process! I'm happy because it will now mean Adam will continue to get help and support he needs which would slowly have been withdrawn over the next year if he had no diagnosis. Hopefully we can go on Early Bird and hios prospective school will be able to access autistic outreacha dn the specialist teaching service if necessary. All I want for both my kids is for them to get the best start in life and reach their potential, for Adam this will just be in different ways than for his younger brother. My biggest fear was that without a diagnosis he'd miss out on help and support and I'd feel like I'd failed him. I don't want to 'cure' him or make him unautistic but I do whatever I can to maximise his functioning and help his passage through life be as easy as possible.

 

Could really do with a big glass tonight but have just had viral hepatitis (got glandular fever ) so am having to stick to orange juice instead

 

Thanks for listening

 

Liz x

[ceecee]

So glad that you have a conclusion, though I am sure you must have mixed feelings.Treat yourself to that glass of wine when you are feeling better.

[Brook]

Hi Liz, <'> <'>

 

I am glad you came away with some answers today.

We too suspected our son was on the spectrum, when we were actually given the

dx three years ago, I must admit my head was spinning, one minute I would be

thinking 'at last we have some answers', the next minute I would feel quite low

about it, I know so many of us here have been in the same situation and to be

honest it's quite difficult to explain to someone that hasn't been there.

 

I hope you do get a place on the Earlybird, I found this to be excellent, it certainly

opened up my way of looking at certain behaviours etc.. I also learnt alot of

strategies, also we could meet with other families that understood.

 

Have that glass of orange juice, then when your better have that glass of wine.

 

Brook

[Kathryn]

Hi Liz,

 

It's good that you have had your feelings about your son confirmed by a definite dx. I understand the relief - we felt like this too last year - when my daughter was diagnosed. Finally there was a reason for everything and someone else knew that we weren't making it all up: that was the important thing.

 

It does take time to sink in and consider all the implications, so go easy on yourself and hope you enjoyed that orange juice!

 

<'>

 

K

[lindy-lou]

hi liz,i also have a feeling of relief at my daughters diagnosis too,sadness as well but at least now we know what were dealing with and can ensure we get the best help available.

 

lynda x

[Guest hallyscomet]

Hi Liz,

 

Glad you finally got this resolved you will feel many emotions, be gentle with yourself, sound like the Glandular fever is a reaction to the amount of stress this has caused you, many of us can relate to that.

 

I am sending you and yours many of these <'> <'>

 

Take care

 

Hailey

[DaisyProudfoot]

Hiya,

 

Marvellous that you've received a dx. It's good that he is at the milder end - you'll find the health professionals will be a lot more willing to listen to any problems you have now.

 

Be prepared for the wave of emotions you're going to feel. It's a tough thing to come to terms with

 

Take care,

Daisy

[littlenemo]

Ed Psychs don't like ASDs they cost money and require more effort so listen to your paed and get that piece of paper.

 

the diagnosis always comes as a shock; I felt relieved too but a couple of weeks later it hit me quite hard

 

sort of bitter/sweet

 

<'> <'> <'>

 

Zemanski

[Guest flutter]

<'> <'>

rest well while u come to terms with it all

but get as many bits of paper you can you will need them all

[witsend]

Hi Liz, my son was dx 5 months ago and I remember posting a similar post to yours then. i too felt a bit guilty that my predominant reaction was relief (bordering on euphoria actually) I was so pleased at the time to get a dx which I was sure was right without having to fight further for it.

Since then I have felt up and down at times but I have never regretted (or doubted) the dx and it has helped with getting more help at school etc. I think you're absolutely right you do do you're 'greiving' prior to dx if you have already reached that conclusion yourself, but you do feel a bit mad that you're practically celebrating the fact that something is 'wrong' with your child .

But it's like you say you're child is the same as they always were and they are fantastic and gorgous and you love them anyway, I'm sure the relief comes from knowing others are taking you seriously (ie your not mad after all) and knowing that this in turn will hopefully access your child the help they do really need

Take care - Luv Witsend.

PS I was worried that the relief/happy feeling would suddenly vanish and I woud come crashing down, but that never happened, I no longer feel like I did but it's been more a gradual coming to terms with official dx than anything else.

[Malika]

Hi Liz

 

It is better to know where you stand but not always easy to take it i. Have a lot of those.... <'> <'> <'>

 

 

Most EP are not too keen on DX as this is often a starting point to get extra help from the LEA. In fact a DX is a way to understand your child better in order to give him some support and lot of love.

 

Take care. <'> <'>

 

Malika.

[lisa]

It's funny how you react. I had very different reactions when my two were diagnosed. With my son, I too felt relieved, almost bubbling that at last we had answers. We'd known since he was about 18 months that there was something different and he'd attended a SEN nursery from the age of 2. He was 9 when he was finally diagnosed so we had 7 years to get used to the idea.

 

With our daughter I was very upset. I took her diagnosis really hard. I hadn't noticed anything "odd" particularly until she started school but then was a bit in denial preferring to think she was copying her brother or it was just a phase she was going through. As there was a family history and looking back she was displaying pretty obvious signs, it seemed to move very quickly. The more we read about Asperger's, I'd never heard of it before, the more I realised that L was actually "more AS" than our son. We spoke to the teacher in the February and by August of the same year she had a diagnosis. I think they already knew but didn't want to say anything. J and L were both diagnosed within a year of each other. I was devastated but glad that we now knew and it had been formally recognised.

 

Lisa

[Lynden]

Hiya Liz

 

Thats exactly how I felt when our consultant said that about Logan 3 months ago (although wasn't 'formal' till today). Relief. I know how I felt so it must be more pointed for you guys as I know how long you've had concerns. I really try and see it as positive because it definitely means that Adam, and you guys, will get the support you need.

 

Lynne xx

[ediebee]

We too have finally got a diagnosis for our son, it's been 4 years in all of people having "concerns", and us realising what they were getting at and having some pretty big concerns ourselves !! Statementing and 20 hours support in school have all been achieved prior to the diagnosis so it's a bit of a horse and stable door kind of thing. At least though all of you trying to get support for your children know to keep pushing on diagnosis or not. We feel happy to have things confirmed and like the old saying goes, a "diagnosis is not a label but a signpost" (thankyou Tony Attwood and Luke Jackson !!). I know it sounds mad now but sometimes I've felt worried lest I'm intruding on the forum, you know, just in case we were wrong. Thanks all of you for all the tips and things you, now we all share. My next question is how have others gone about telling their kids the diagnosis?how old have they been ? and what happened when you told them, or did they realise they were unique, I refuse to say different cos it sounds too boring for our gang !!