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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

my child has just got asperger's diagnosis,do i tell him,and what do i say?help!!!

27 replies

crazypanda · 27/01/2011 22:44

after almost five years my child has been diagnosed,it's still not sunk in for us,but do i tell my teen?.Does anyone with this experience have any advice for me please?.

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TooOrangeyForCrows · 27/01/2011 22:51

Hi
No personal experience, but until more helpful people post, have you tried the National Autistic Helpline, for starters?

Original poster

crazypanda · 27/01/2011 22:55

no,like i said it's still sinking in at the moment ,but thanks for that.Up until now they said they could not help without diagnosis,but i suppose now they can,thankyou.

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TooOrangeyForCrows · 27/01/2011 23:10

Really? Hmm....is there a local Autistic group? Search on the NAS website. The local group may be much more useful, in terms of support groups and advice.

There's a lot to think about for all of you. Nobody wants to have a dx but I hope it will help you move forward.

TooJung · 27/01/2011 23:16

How much have you discussed the assessments and meetings which have been part of the process?

I approached it by explaining roughly what the meetings were for before each one happened. I gradually found words which seemed positive, kind and perceptive to use about how things were for each of my boys.

My older son was more open and aware about autism. For him mentioning spectrummy actions and habits which I and my husband have was the starting point. My husband always does the same things each morning and evening, is a lover of routine. I am

My younger son was much more edgy about the whole thing. He was distressed by school, we'd started home educating him and he is a person who hates being different.

Over time I have pointed out that special food requirements, high compatability requirements for friends/relatives he'll see, being highly self-motivating/immersed in one interest and flapping/twiddling hands are part of autism and clearly living in our house! He has asked me about it once or twice and I do find it a minefield as I so don't want to be hurtful.

Reading kind and gentle descriptions of autistic actions is good. Then I am able to translate 'awful eating habits' into 'really likes favourite foods and decides in his own time when to expand his repertoire'. See :)

Be really kind to yourself. The past years may have been hard. It took me several months to process the moment of diagnosis, the end of one process and the start of the 'marathon, not a sprint' life.

Original poster

crazypanda · 27/01/2011 23:21

thanks there is'nt much in our area and the sad group does not run properly,long story.

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Original poster

crazypanda · 27/01/2011 23:26

thankyou so much,my heads all over the place!i knew he was,but when you actually hear the doctor say it,it becomes real,he knows about all the doctors and appointments,but we have'nt told him about the outcome yet.

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Mssoul · 27/01/2011 23:27

I would not tell him yet until you are at peace with the dx and have fully come to terms with it/made a strategy. I'd be concerned he would tell peers who are way too young to understand.

I would adapt the way I manage his behaviour/actions at home with assistance from professionals.

The teachers need to know, does this happen automatically?

I would also be careful who I told too so he is not avoided by parents who may fear this dx.

Original poster

crazypanda · 27/01/2011 23:31

school is the biggest problem!he attends mainstream and it is very difficult to make them understand,they regard,and punish him like a"naughty boy",and it is driving me insane.

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Original poster

crazypanda · 27/01/2011 23:38

sorry,but i am shattered,must go to bed,thankyou so much for your messages,please keep them coming,iwill be back on tomorrow,goodnight everyone

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Mssoul · 27/01/2011 23:39

Aw that sounds hard on him and you. Maybe if you meet with his teacher things will improve?

Mssoul · 27/01/2011 23:39

Goodnight crazypanda

lisad123isasnuttyasaboxoffrogs · 28/01/2011 00:08

Let it sink in first then maybe think aboutctelling him. We told dd1 when she was six and its helped alot. Get some rest and take some tine.

Al1son · 28/01/2011 08:05

Definitely give yourself time to come to terms with it first. For the first couple of weeks I coulnd't even say the words Autism or Asperger's Syndrome.

My DD1 is 13 and got her dx last year. It's really helped her to understand herself so telling her was a very positive move. THB you couldn't have hidden it from her at that age anyway.

DD2 is 7 and being assessed. We haven't mentioned it to her yet but she feels different and abnormal so I think when (and if) the time comes it will help her too.

You'll probably have a few weeks when you feel really shellshocked. Then you'll begin to come to terms with the dx and it will begin to feel normal for you.

bullet234 · 28/01/2011 09:10

If he has the ability to understand, then he has the right to be told. Better that than one parent who told you at the age of 30 "oh I always knew you were different but I wouldn't have you labelled" .

embracingtangents · 28/01/2011 09:33

This book was helpful to DD when she got her dx. Its written by a teenager and really explains what life is like with AS.

Telling DD was, for our family, the right thing to do as DD was relieved there was a reason for her difficulties. Telling her has helped her self-esteem. It has also been the key to getting appropriate help for her at school.

Our local support group has helped me to come to terms with the dx. I was shocked and amazed by how much we had in common with a group of strangers the first time we attended.

IndigoBell · 28/01/2011 09:37

Definitely tell him and school.

That was the whole point of the diagnosis - right? So that he could get help?

School can't tell him if they don't know (and if you don't continue to be a PITA)

He can't help himself if he doesn't know...

Also tell relatives and close friends....

Not today and not all at once. But soon enough.

The dx doesn't change him. But it helps people understand him and accommodate him....

moosemama · 28/01/2011 12:14

First of all, well done for getting the diagnosis after a long fight. Secondly you need hugs, chocolate and wine and a bit of time to come to terms with it. I am with you, my ds1 was diagnosed last week and I am still up and down, even though it was really only rubber stamping about what we already knew.

As Indigo said, nothing has changed, he's still the same boy he always was, the diagnosis is just a pathway to him getting all the help and support he needs. I do understand how difficult it is to get your head around though.

We aren't going to tell our ds just yet, but he is only 8 and we have discussed it with his Ed Psych and the Clinical Psych that did his assessment and we all agreed that he isn't ready yet.

The NAS website has a section of advice about how to tell children of different ages here.

The school should definitely be told asap, but be sure to let them know whether or not you have told him.

Is he getting any support in school? The SENCO should be your point of contact, but they should also bring in the Specialist School ASD Inclusion Team, who can work with both your ds and the school to make sure he is getting all the help he needs and can advise the school about things like, safe spaces to retreat to, having a 'safe adult' to go to when he has a problem and also making sure any sensory problems to do with the school environment have been taken into consideration. They can also do some ASD awareness training with his teachers.

Don't feel like you need to rush around telling everyone straight away (with perhaps the exception of the school, so support can start asap). Take a bit of time, allow yourself to process it all then do it bit by bit when you feel ready.

springlamb · 28/01/2011 13:59

I second telling him. As I don't know his exact age, I can't say if he should have actually been there while you were receiving the diagnosis. DS was 15 (nearly 16) when he was diagnosed with Aspergers and he was present. We had been quite open with him though about the assessment all along.
For DS, there isn't any intervention planned. What you see is what you get. However, it is essential for school/college to know about the Aspergers, and you should consider letting the organisers know if he takes part in any organised clubs/activities. However, we only did this with DS's agreement.
Being able to discuss it with him has made it easier to encourage him to think twice about his behaviour and what he says to people. We can laugh together now about the odder aspects of his particular Aspergers, and we can gently remind him when he says something that might upset other people, ie "that's Mr Asperger talking, not Mr DS" and he thinks about it then agrees.
It has helped him to know that the differences aren't just because he's 'odd' or a 'weirdo'.

Original poster

crazypanda · 28/01/2011 21:57

thanks,but school do know the doctor came into school because he was sick of waiting for them to reply to his letter,we goy the diagnosis in school yesterday,so yes they do know,i'm sure that they are going to have to help him now,but they have treated him so badly.

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Original poster

crazypanda · 28/01/2011 22:07

thankyou for your lovely message,it cheered me up,you have told me some things i did'nt know,i have to go into school next week for a meeting,the speech and language is going to meet with senco to discuss what they need to put in place for him.

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Original poster

crazypanda · 28/01/2011 22:11

thanks for your message,no he was'nt present,but he does know some of whats been going on,

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chickchickchicken · 29/01/2011 00:37

we read the book mentioned by embracingtangents to our ds when he was about 10. he was so comforted by it that he slept with it for a few months.
please dont be worried about your reaction. we had a few years to prepare and had lots of positive thoughts re AS but i still quietly cried for a few weeks
when i felt at ease with dx we gradually started bringing references into conversation over a few weeks and then read the above book (after we had read it first to check we thought it was something he could cope with)
you know your son best and once you have adjusted to dx you will know best way to approach it. best wishes

Original poster

crazypanda · 29/01/2011 22:54

thankyou.don't know if you will get this message,did you get any professional help and support when you got dx,the paed said he would be contacting everyone involved but i don't know what else.

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chickchickchicken · 04/02/2011 22:41

crazy-just popped back to check this thread. were you asking me specifically? happy to help if i can

Original poster

crazypanda · 04/02/2011 22:47

hi chick,put this message on last week,did'nt realise it was still active ,i've just started another tread,asking about the likeliness of getting a statement now ds has aspergers diagnosis.

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