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Autism Diagnosis

73 replies

Lillypond · 13/09/2005 17:05

Hello ladies

Some of you might remember me. I used to post under the username jenkins88, but changed it a few weeks ago because I felt that all my posts were so depressing and neurotic, and I was starting to think that DS would be okay after all.

I've had such a horrible day today. Took DS to Dev. Paed. for his second assessment and she diagnosed him as autistic. She said that he was at the milder end of the spectrum but would need lots of help during his school years. She's also going to test for Fragile X syndrome although she doesn't think it's likely.

I feel completely shocked, gutted, hopeless. After she gave her diagnosis she talked alot but I couldn't follow what she was saying. My throat was aching because I just wanted to break down and sob, but I was shaking and I felt like I was going to faint. DS just sat and looked at me and she said 'Is that how he normally reacts when he see's people cry'? I nodded and then she gave the student a kind of 'knowing' look.

I cried all the way home. Took him to nursery and told the teacher and started crying again. I feel like I'm never going to be able to speak to anyone ever again without crying.

I'm not ready to accept this and I don't really beleive her. This is all so nightmarish.

What do I do now? She did mention the autistic society but I just want to speak to other parents who are going through this or have been through it.

Sorry if this a big ramble. I'm not really thinking straight at the moment.

OP posts:
jayzmummy · 13/09/2005 17:07

Cant add anything ATM...DS's are calling me...just want you to know I totally understand the feelings you have right now.

dinosaur · 13/09/2005 17:12

Lillypond, feel free to ramble. Diagnosis is a big shock. I thought I was completely prepared for DS1's diagnosis, but when the paediatrician said: "We think he is best characterised as being on the autistic spectrum" the whole room started to spin round and I could hardly breathe at first.

How old is he - he must be pretty young if he's still at nursery?

Lillypond · 13/09/2005 17:19

Thanks jayzmummy and dinosaur. I really need to talk at the moment, but no-one in RL knows what to say, which is completely understandable.

DS is 3.8 yr's. It was his first day at nursery yesterday. He was supposed to start in April but wasn't ready so we held him back for a bit.

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dinosaur · 13/09/2005 17:25

I know,it is hard to talk to people in RL about it. I got so much help and support on here, that's what got me through really.

How did he get on yesterday?

Fio2 · 13/09/2005 17:30

Honestly lilypond, we have all been there whether our children have autism or 'other' problems. it is very hard. Talk to us here, its what got me through too and tbh I had struggled along for quite a while alone before mumsnet. i am thinking of you, and remember how you feel is normal

Lillypond · 13/09/2005 17:31

He was fine. Even asked to go back before bedtime. Bless him. There was an incident with throwing water apparantly, but all the other kids were wearing aprons (DS wouldn't wear one) so he was the only to get wet. Phew! I would have been v. embarrassed if all the kids had been in different clothes when their parents picked them up because of DS.

He has quite severe language problems so it's hard to know what he did all day. the only thing he told me was 'shush'. I asked the teacher today and she said he had been v. v. loud.

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Socci · 13/09/2005 17:32

This reply has been deleted

Message withdrawn

Lillypond · 13/09/2005 17:33

Thank you Fio. This is silly but, when she was talking after giving her diagnosis I just kept thinking 'I want to go home and post a message on mumsnet'. I feel normal on here.

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dinosaur · 13/09/2005 17:35

Glad he got on okay.

My DS1 (who has HFA) is six now and has good language skills but he's still very reluctant to tell me anything about what happens at school!

Lillypond · 13/09/2005 17:51

Hi Socci - we've known for definite since April that 'something' was not quite right with DS but didn't know what. I had suspicions from birth but no-one else was particularly alarmed by his behaviour. It was horrilbe to be proved right. I think I felt worse then than I do now TBH.

I'm so shocked that he's been diagnosed so soon though. I really thought we had quite a few assessments to get through before this.

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jenk1 · 13/09/2005 18:23

lillypond, my ds was diagnosed at his first assesment back in april and we are STILL waiting to get him any further help.
When they told me that ds was aspergers/high functioning autism spectrum i couldnt speak, i was silently screaming inside.
I phoned DH at work to tell him but i couldnt all he could hear was big sobs down the phone so he came home.
For the first week i was numb, crying every day blaming myself for all the things ive told him off for which now i know arent his fault.
But by some miracle i found MNET.
I posted a lot on special needs and with help and support got through it as you will too.
Keep posting on here and let us know how you are going on.

nutmeg · 13/09/2005 18:34

We were told in May that our ds was on the autistic spectrum. (aged 3.6 at the time) We were in denial for several weeks but as the months go by it has really helped having the diagnosis. The nursery, the statement, the Ed psych is slowly coming together and we are tailoring an education that is best for ds. (not got statement but in process) It does get easier. I think you are going through the most intensly horrible part. Good luck and lots of love and support.

Lillypond · 13/09/2005 19:09

Jenk and nutmeg - thanks for the hugs and support

I don't think the full horror of this has hit me yet. I am definetly in denial. I keep thinking that she's wrong and things are going to get better. Then I remember all the things that lead me to getting him assessed in the first place and realise that DS's problems are the same regardless of the diagnosis.

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Davros · 13/09/2005 19:22

Lillypond, so sorry to hear about this and no wonder you're feeling awful. The feeling awful is normal, as everyone says, but it still stinks doesn't it? There is a lot that can be done but the biggest reality is that YOU will probably have to pursue a lot of it yourself. There's plenty of us on MN who can help you out with ideas, advice and info. I would definitely look at the NAS website, but take it a little slowly. At first you think that every day is going to make a big difference but you do need to give yourself some time. You can't hang around waiting for other people, professionals etc, to put everything on a plate and you will have to get your loins girded, but a little breather is in order. xxx

nutmeg · 13/09/2005 19:34

Taking a breather is a good idea! When you feel ready I agree with Davros that you are going to have too channel all your energy into doing something. We have had to instigate the statement as the nursery were told to wait. This has resulted in our meeting with an Ed Psych which has been good. The only voluntary NHS contact we have had since May is one speech therapy session!! It is push, push, push.

Davros · 13/09/2005 20:27

Yes lilypond, don't let other people (nursery etc) tell you that "this isn't necessary, that isn't appropriate" etc. Find out for yourself and ask other parents.

Lillypond · 13/09/2005 21:26

Hi Davros - it's funny that you should mention nursery as the teachers reaction today was a little strange. Her jaw dropped when I told her and she summoned her helpers and they more or less dismissed the diagnosis. One said 'they're not always right about these things', another just said 'nooooo', and the teachers parting comment was 'I shouldn't worry about it'. I have to say that they made me feel better but I'm not sure it's good for them to be arguing with the paed's dx after only meeting DS a couple of times. It's all early days though and they may change their minds when they witness some of his behaviours that up till now have been reserved for home.

I'm gonna have a look at the NAS website now but I'm definetly not up to thinking about therapies or the like just yet. I may see my GP and get some anti d's. They helped me to function when I had PND so they might help me now. Different situation of course but I feel that I need something to help me to just get on with things like the shopping and taking DS to nursery.

Thanks for all your help, advice and support that you've given me tonight. It's helped alot.

OP posts:
Davros · 13/09/2005 21:45

I think it terrible that they are saying these things to you and it could really do some damage, but I don't suppose they mean to do that at all, they just think they're reassuring you. Although its tempting, don't let them deflect you from dealing with it when you're ready. Could you ask for some sort of home/school book with a few simple headings? you tell them about Sleep/Eating etc and the night before and any other info and they give you some feedback on communication/behaviour etc? Might be wise to leave it a week or so though.

Jimjams · 13/09/2005 21:53

Agree with Davros. Give yourself some time. I knew we were going to get an autism dx but when told it was likely to be autism I still ended up collapsed on the floor outside sobbing into the carpet in a most melodramatic fashion.

You may not believe it yet- but honestly the dx is the start of things getting better- it's very hard when you don't know what is wrong.

mizmiz · 13/09/2005 21:59

Hi Lillypond.
I remember your posts and just want to say hello and offer some cyber hugs.
It is a horrid scarey time but things will get better as your son becomes older and everyone who deals with him understands his needs better.
Remember that Autism isn't an illness,so in many ways the diagnosis matters very little beyond it opening doors to more support and specialist help.

I'm feeling a little drained today.My dd is (language disorder) is seeeing a developmental paediatrician on Monday and I stared putting some notes together this morning. Three hours later,I had written nine pages!!!

I'ma salt so I couldn't help myself lol!

Mind you,feel so much better for having put some of the thoughts which until now have been swirling around my head onto paper.

Please let me now if I can be of any help.


newscot · 14/09/2005 00:24

Hi lillypond. Know how you are feeling. It is just shit- felt so angry with myself, the world even DD
Of course I don't know your son but things are likely to get better for him as he matures. Just take time for yourself at the moment- cry all you want, scream, shout. This isn't what any parent wants- suddenly life isn't going to turn out like you thought. I know I still have trouble with this and the future is also scary.

Tiggiwinkle · 14/09/2005 10:12

Hi Lillypond-My DS was DX with Aspergers this year. Autism had first been mentioned at an assessment the previous October, and at that time it was a complete shock. I suppose by the time the actual DX was made in March we had come to accept it as a real possibility but it was still not easy.
Your DSs nursery teachers sound as if they are reacting in a very similar way to my DSs school. His teachers-even the SENCO-refused to accept the possibility of AS when it was initially considered. They reluctantly accepted the actual DX because it was made by a respected psychiatrist at the CDC. Try to ignore the nursery staff comments as they are not the experts in the field. This diagnosis is not made lightly and the nursery teachers are out of order to question it.
You will feel better with time,believe me.


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maddiemo · 14/09/2005 10:15

Dx is a shock but it does bring and end to that "is he isn't he" phase.

I don't think nursery is being helpful with their comments, however they are probably trying to reassure you.

As Davros says there are many of us here that have been through dx and beyond to listen and help.

Take care

Lillypond · 14/09/2005 10:23

Nutmeg - Although I'm not ready to accept this DX yet I am in some ways a bit relieved that we've got it. I may still have to fight for help (not yet though) but surely it's got to get easier now. I think this has all been harder on DP than me. He wasn't at the asmt and keeps saying that he thinks the paed. has made a mistake and that the DX will be removed at his next appt. Part of me would love that to happen but realistically I know it won't.

Davros - I think his teachers reaction was probably my fault. It may have been better to give her a note and ask to make an appointment rather than turn up at the school in her lunch time and blurt it all out. I just hope it's not going to lead to a struggle if he needs one to one help (which I think he needs already. Yesterday he had a scuffle with another boy and he's wandered off a few times). I wanted them to know as I didn't feel that they understood what I meant about his 'language problems'. They kept saying 'Yes, we cn see he has problems with speaking, but it's alright as long as he understands what is said to him'. I keep saying that I have no idea whether he understands anything because he won't respond and never does what he's asked to do. I'm scared that he'l hurt himself or someone else because he's got very little danger awareness. I'v seen him try to put things in his eyes before and he's started licking people (I don't want another child to hit him).

Jimjams - I wasn't expecting this but I think I should've been. Before the DX was given the paed. said 'I think you already know what my diagnosis is'. I don't think I would've reacted differently anyway. The pain in my throat was unbearable. I did feel like I was being 'melodramatic' when I left her office and had to walk through the waiting room. Lots of parents waiting for hearing tests were probably thinking 'OMG what has she just been told'.

Mizmiz - thank you. I remeber you posting on my threads a while ago when this all started and it means a lot that you remember me. I hope DD's appt goes well on Monday and I had a bit of a giggle about your 9 pages of 'notes'.

Newscot - thanks. I've done a lot screaming and shouting but it's probably not over yet. I know what you mean about feeling angry with your child. It is sh*t.

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Lillypond · 14/09/2005 10:40

Davros - I like the idea of a communication book. I'm not ready for the other mums to know yet but they probably think I'm a bit wierd because I'm hanging around to talk to the teacher every day. I really want to know a bit about what he does during the day. Last night I think he was saying 'Heads and shoulders' and I think they might have sung the nursery rhyme. If I knew then we could practice a few things at home and it would help with his communication. I don't think he realises that I don't know what goes on there so he doesn't tell me anything.

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