Anyone else have mixed emotions like me prior to dx?

[Blossomhill]

As lots of you know I have a dd aged 6 1/2 with a very vague dx of language/communication disorder.
Anyway we are in the process of going to Camhs and are seeing an excellent diagnotician (?)
As dd has got older I do think she had some kind of asd even though is has always been dismissed by most pros. As new woman I am seeing has said it can be hard to detect and that she really does know her stuff and will get to bottom of it all. Dd has indicators of Aspergers and Adhd. Obv. she also does have a language disorder.
I have such mixed emotions about the whole thing. A huge, huge part just wants to know once and for all and it would make far more sense to me if she was dx with asd, however mild. On the other hand I am really upset inside as when I am finally told in black and white my dd has a lifelong disability I cannot help but feel really sad about it. It will hit me hard I know but hopefully will help me move on. I do have lots of anxiety about it all and really do want to know asap so I can get on with things.
Am I normal to feel this way?

all perfectly normal i think, autism is a bit of a roller coaster, but if your DD has ASD then there will be better ways of people working with her IYKWIM, it doesn't stop you feeling gutted thou, i was gutted three times and the last time was harder than the first, give yourself time and be kind to yourself

Absolutely of course you are normal. It's always better to find out about these things as early as possible so you can get the right treatment for her. It sounds like you are prepared anyway from previous posts.

For my part it was a relief really although we suspected it and were about 90% certain when the dx was made. I go from some days hardly noticing or worrying to other days when I am pulling my hair out!

Good luck with the appointment.

It sounds fairly normal to me. With ds1 I was torn between wanting someone to say that he was absolutely fine and wanting someone to give a dx so that I knew what I was dealing with. When the dx finally came I felt a huge sense of relief but also real sadness about his future.

It was slightly different with ds2 as I'd recognised the signs fairly early on and just wanted confirmation IYKWIM. When the Paed finally gave the official dx a couple of weeks ago my first reaction was to say "That's great!" The student in the room looked a bit shocked but the Paed knew exactly what I meant and explained to her that knowing what you are dealing with can be a huge help.

I hope you can finally get some answers, BH. xx

It's perfectly normal. My overwhelming emotion when we finally got a formal ASD diagnosis was relief and elation even. Felt guilty for feeling like that about being told my son was autistic but we'd suspected for nearly two years so it wasn't a surprise and getting a diagnosis meant we could move forward in terms of support and input for DS. Also takes away some of those feelings of guilt or being my fault/bad parenting he the reason he was like this.

A few days later as it sunk in I did feel sad, like the spark of hope I'd been carrying that DS might outgrow his problems had been extinguished and there were a lot of 'what ifs' and pondering about the future. He was still the same child though as he was before diagnosis and focusing on that really helped. Having a 'label'didn't change the substance of who he was.

Hope your appointment goes well

Liz x

Thanks everyone. Lizlocket I think you have hit it on the head. I was always hoping and praying dd would outgrow her problems and I guess to have an official dx will be hard as it will re-inforce that this isn't going to happen.

Blossomhill, The first time that I ever went on to MUMSNET, was the day my ds was diagnosed ASD, and judging from my nickname on here, I can honestly say I know where you are coming from. Good luck

Blossomhill, I felt the same, but was glad to have a proper diagnoisis at long last.
You feel sad, but glad someone can explain the bizarre behaviours and the reasons for it.

I thought ds would grow out of it and someone people even say perhaps he will grow out of it, even now with his diagnoisis.

I feel happier inside that I knew a further assessment was needed and I was right to get to the bottom of it. larsxx

In my child's case, it was a matter of "beware of what you ask for, as you may get it". I was so scared for my little guy and i screamed and hollered and got a diagnosis in four months. No waiting. And yep, it was scary as all get out. In fact it was probably the very worst day of my life. But that was 7 months ago and had i not done it, I dont know where we would be now, but i am sure, much more frustrated. As it stands, now 7 months later, my son is in a full time ABA program is being fully investigated "biomedically" and has all his NHS therapies in place.

After just coming from a meeting yesterday where parents lamented the fact that they are still waiting for a diagnosis or considering getting one, after years and years of waiting, I am extremely happy with our decision to push the boat out and fight early on. Dosent make it any easier to know that our child is ASD, but at least the worrying about "whats wrong" is finally over.
Its an awful awful situation to have to "fight" scream and beg for a lifelong diagnosis for your child. Even worse, is when you find that there is very little help out there, or at least not without fighting for it.

But the dx is the first and very important step. It really is a process, both you and your child have to go through.
But sure, you know all this already. Fear factor is, I think, for everyone involved, 10/10

My daughter was recently dx with developmental co-ordination disorder. [the OT confirmed this today] I thought I would be really pleased as I have been pushing for this to get her help in the classroom... but instead I feel really flat..

We have a 2 and a half hour appointment on Monday with SoCom to assess her for ASD or AS and I am fretting about this already...

So Blossomhill.. in answer to your question "Am I normal to feel this way?" yes I think you are.. I'm feeling the same..

blossom hill, just wondered how things are going for you now? hope you are feeling a bit better about your dd dx, I know it takes a while to accept even if you have had your own suspisions for some time. Anyway hope you are well.

Hi Blossomhill. We've just started the process of assessments and diagnosis. We didn't know if we wanted to approach it this way, but we felt we had to in order for us to be able to get DS' school to respond appropriately to his needs and not label him as the daydreamer or the naughty boy. DH is in CAMHS and was more reluctant than me. I'm feeling dreadful at the mo. We suspect that he has dyspraxia with some Aspergers traits, but somehow when the paediatrician confirmed that she thought we did have cause for concern, it was a bit of a blow. I know if she'd have said he was fine, I'd have felt frustrsated because I know that he's not. Like you, I'm feeling hugely sad and worried about the future. I also feel guilty about feeling like that and about the fact that there is a problem, as if I caused it. Some days I'm fine, others v. upset. I felt v. reassured when I read your thread because I think it is normal to feel this way, to feel torn bet. needing to know and not wanting to. I hope you are feeling ok Blossomhill.

Hi everyone. Sorry haven't been around for a while, just been so down with everything and had a really bad few weeks with lots of different things going on.

Well I now have a HUGE dilemma as dd's school have said I need to be very careful about getting an offical dx of Aspergers. Dd does have a language disorder and this is her primary need. If I get an official dx of AS it may jeopardise her current placement and even worse her place for secondary school at the local ICAN unit. School again feel she probably fits more into the semantic pragmatic language disorder (which is similar to AS) and do not feel that the local unit for children with AS would be right and I ceratinly wouldn't want her going to the secondary AS unit as has a terrible reputation.
School also feel that dd is 6 and does need to unravel a bit more. Apparently a boy in year 6 nearly lost his unit place because 5 years he was dx with AS but clearly would benefit more from language unit then the AS one!

Sounds like a complete minefield!

It's also very :( that the help a child gets depends on their dx rather than their actual needs.

HI CT :) Not long to go now. Hope you are ok xx

Actually ct you are right. It has made me realise that in my case a dx actually doesn't make a blind bit of difference except for me to know. So has changed my whole view on it tbh

One thing though if we go ahead with ADOS and dd does get dx with AS can I with hold that information?

BH - I would agree you need to be very careful. We've effectively scuppered our son's chances of getting a place at the local language unit because we went for an early dx of ASD, even though the professionals we've seen agree that his language disorder (prob verbal dyspraxia) is his primary 'presenting feature'. I'm not saying that we disagree with the ASD dx, but that we think his individual needs might be better met by the unit rather than m/s or special school.

Although it sounds cynical, I would say (in my admittedly limited experience) that it's best to get the dx that best fits where you want the child to go to school. We are currently waiting for a referral to the Newcomin (sp??) clinic at Guys to get DS's language disorder diagnosed. I figure that if we get that written into his overall dx we've got a better chance of getting what we want.

Minefield is exactly what it is!

Bh and Sphil, it is very similar here. My ds3 was turned down for langauge unit due to autism dx and to be fair at the time he also had MLD, therefore his needs were best met at mld unit. Four years on, I would say his primary need is langauge (limited comprehension, difficulty constructing coherent sentence age 7). Autism is still there obviously, but no where near the levels of distress at school that he used to show. My LEA has rather sweepingly removed all MLD provision so our only choice is SLD or mainstream. The langauge unit will not take him so basically we have to m/s.

Ds4 has no dx, although I believe he would suit SPD(but that is not recognised dx here) DS4 has no learning difficulties and is non verbally very bright however language wise he is functioning much lower than his age of 4(probably around 2) but too disordered to get clear picture. Although he has been referred to cdc I know I will not accept an asd dx if there is a posibility of him getting the language unit. I have also made it clear that langauge must be recognised as primary need in any statement.

Good luck BH it really is a minefield and I have to say that where I live language disorder kids access far better support than those with asd.

Sphil, how did you get referral to Newcomen?

Our key worker suggested it (apparently Guy's is our tertiary centre, whatever that is)and got our paed to refer us. We haven't heard whether they've accepted the referral yet though.