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I dont want anyone to know about autism dx...rant from hell!!!

(74 Posts)
LunnyTunes Tue 29-Sep-09 22:12:14

Am I being silly?

My brother told his teenage kids/new girlfriend ...who the hell else has he f@@king told that my son has autism (dx 3 yrs ago)

angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry angry

I dont tell no one not even friends the hope that I can get him up to the best he can without being judged in this 'if you got autism you dont fit in' in this society! Dont argue they do cause here you read all the time...teachers/professional/friends/other peers problems...we wouldnt need support groups like this to pour our f@@king hearts out to if all was dandy!

I have opened a can of worms but dont I have a the mum have a right to confidentialty for my child. I'm devestatedsad and extremely angry

mysonben Tue 29-Sep-09 22:18:46

You have every right to be angry with your brother...i suppose he knew about your views on not telling openly to everyone about your DS's dx?

I would be p*off too!

LunnyTunes Tue 29-Sep-09 22:33:41

oh yes!!!!!!!!!!(thanks for agreeing thought I was being lunny for being so strongly against any tom dick or harry knowing) the big lump of sh@t dont see my son from one year to the nextangry (seen him 2 times in 3 years and lives a mile away so why talk about my son grrrrrr

Oh god I'm fuming! Well I feel really upset was none of the t@@t buisnessangry

I aint doing all this hard work for nothing trying to get him up with his peers!

theworldsgoneDMmad Tue 29-Sep-09 22:44:09

"seen him 2 times in 3 years and lives a mile away so why talk about my son grrrrrr" - well, why talk about DS to him then???
Did you also tell him that you didn't want anyone to know?

What happens when you "can get him up to the best he can"?
Will you tell anyone then?

Maybe your brother thought he was doing the right thing by making his family aware of the circumstances, regardless of how rare their contact with him may be.

You may have the right to confidentiality but your brother isn't obliged to be bound by that. With those rights come the right of your child to have his autism taken into account by those who do care.

All rhetorical questions really, just for your own consideration, from someone who can empathise

daisy5678 Tue 29-Sep-09 23:05:20

I do get why you're upset and angry. But maybe your brother isn't ashamed of his nephew having autism. Maybe he thinks that telling people will help in their understanding of your son when he finds something difficult. Maybe he doesn't see it as a thing to be embarassed about, but more a way of helping people to understand and accept your son for who he is.

Of course there are problems attached to having autism, but they are problems that will be there regardless of whether or not your share the label with others.

You're not being silly but perhaps you need to think about why this bothers you so much - there's nothing weird about finding a diagnosis difficult, but keeping it a secret A) puts pressure on you and B) doesn't change the reality.

Sorry if this sounds harsh, but I'm a little sad that autism would be something to be ashamed of or kept secret, like a dirty, horrible problem and hope that you can find some acceptance of what your son is so that you can deal with him as he is.

LunnyTunes Tue 29-Sep-09 23:27:28

No disrespect if my brother was doing the 'right thing' he would come and take my boy out or give me a boy hasnt got another 'male' role model in his life! He's never given him a thought/visit/present.

My mum tells him everythingsad she cant help herselfangry Please dont say stop telling my mum...cause I aint got no one else.
His ex wife runs/owns an autism/LD unit I bet she's laughing her head offsad, he is single living the life of riley now...his kids dont see my son...why should they know?

He knows how I feel. My mum slipped up and told me cause we hardly speak cause he doesnt bother at all. Oh only when he thought I'd employ his girlfriend as a tutor who can hardly speak a word of english WTF!!! Great teaching language their LOL (Not f@@king funny though is it!!)
'Can get him up'...nope! Been 3 yrs now dont think I will ever want to tell people he got autism. Its not denial/'s he has a 'difficulty' and with the right help he'll overcome it. Plus past experience of 'put in a cornflake box'/stigma/prejudged. Oh and maybe a little overprotectivewink. He is dx severe but even if they said he had Aspergers in a few years which is seen more positive I still would not want people to know...they dont give a sh@t why tell brother and sister is proof of that! I was forced to employ my 10yr older Sister's son to work with my boy....he was lazy, didnt give a dame and my sister blame ME (after he left the job) because he hasnt got a job to support him through uni (2 yrs ago this happened) ...she dont speak to me over it...she lives 2 streets away(my mum lives with cant even take my boy to his nanny's house...I cant visit my mum around the corner.

God I hate my f@@king family(except mum).hmm this started off with my brother...but clearly opened can of worms of the amount of supprt my son gets from his family/no cousins/no visit to nan/aunite/uncle etc

I now your being helpful by the waywink

othermother Wed 30-Sep-09 00:25:50

Why would his ex wife be laughing? Seriously, if she works in that field then surely she would be understanding?

Also, autism isn't just a difficulty, it's something your child will have for life and it's through support and understanding that he will cope with it.

Sorry, I can understand being upset that something you didn't want others to know about being made public, but I don't understand your reasons why you want to keep his diagosis so secret.

LunnyTunes Wed 30-Sep-09 00:55:02

Othermother...she doesnt work in it she owns it and no it aint 'understanding' when it comes down to it it is the 2mill she made last year is all she cares about!

Autism is a 'learning difficulty' see DWP DLA DSM etc etc child can make improvements even cure!oh Yes 'autism' can be life long but the syptoms can be worked on to result in asymptomatic/extremely mild

Stigma, put in a box, seen as less able to function, love, emotions, learn, understand...and thats just the professionals! Example in last school he was put in bottom set....why becasue he had autism. This year in new school in top set why because this school is nonjudgemental treats everyone the same...and took the time to realise he could read/add/comprehension etc.
Oh and one day he will be 'normal' what ever normal is (conforming in society maybe) so why should I let anyone else know anything else? Its none of their buisness! Isnt it his diagnosis to decide what to do when he is older!

mysonben Wed 30-Sep-09 01:27:38

It isn't nice when relatives keep upsetting you instead of supporting you.
I know i get a lot of upset from my sis. sad
So i can empathise with you.

I can also understand how sometimes we do not want to tell certain people about our dc dx, but sometimes it can be helpful. It really depends on the situation and the people involved.

It is your right to wish that your ds'dx isn't known by everyone, but unfortunately we do not control other people.
So if i was in your shoes i would try to arrange to have a word with your brother and maybe your sister too, to let them know how you feel about the whole situation.
Maybe worth a try to patch things up a bit too if you can...wink
Good luck either way.

AttilaTheMeerkat Wed 30-Sep-09 07:34:08

"Autism is a 'learning difficulty' see DWP DLA DSM etc etc child can make improvements even cure!oh Yes 'autism' can be life long but the syptoms can be worked on to result in asymptomatic/extremely mild"

I know of no child who has been "cured" and DAN certainly has its critics. The last sentence in this para in particular sounds like denial. Other people may not give a "shit" but you do and you could channel that more effectively. If you are not going to be his advocate then who will be?. Autism is a wide spectrum and far more than solely a "learning difficulty": it is a lifelong disability.

Telling no one about his autism if your choice but ultimately neither helps him - or you for that matter. You will remain stuck in the place you are now and I don't think you've even started to come to any terms let alone acceptance of his autism dx.

"Stigma, put in a box, seen as less able to function, love, emotions, learn, understand...and thats just the professionals! Example in last school he was put in bottom set....why becasue he had autism. This year in new school in top set why because this school is nonjudgemental treats everyone the same...and took the time to realise he could read/add/comprehension etc.
Oh and one day he will be 'normal' what ever normal is (conforming in society maybe) so why should I let anyone else know anything else? Its none of their buisness! Isnt it his diagnosis to decide what to do when he is older!"

Do his school actually know about his autism dx?. A diagnosis should be seen as a signpost to getting more help and he could "fit" into society quite happily. Equally he may well not be able to live a fully independent life as an adult and may need support. Autism should not be seen as a secret or shameful. I think you feel deeply ashamed that your son has autism although you are in no way to blame for this to have happened to him. You're carrying around an awful lot of pain and anger hence this strong outpouring of emotions. Maybe you're more angry at your own self rather than just your family.

What will you do if he starts asking why he is "different" to his peers and gets socially excluded from parties - what would you tell him?.

bonkerz Wed 30-Sep-09 08:31:32

as a mother of a 9 year old boy with autism i find this thread sad. Yes i do understand you are upset about betrayal by your brother thats fair enough. Your family sound rather complicated and i understand you feel fed up with them.

I dont understand, however, your reasoning behind keeping your DSs DX of ASD a secret.
My Ds is on the milder side of the spectrum BUT he has HUGE problems in other areas and when DSs Autism rears its ugly head it is horrid. Sometime i feel like my DSs autism is like a sleeping monster.....its not always visibly clear but when it does come out to play is horrid. When DS autism is visibly clear i find myself telling everyone who is staring or just watching exactly what is wrong with DS. I find this helps me to deal with it.....i would rather people got educated about autism and how it affect my DS then judge me as a bad parent who lets her son hit her and scream and generally be a tazmanian devil in public. To some i could appear to be an overprotective mother who wont take her DS to parties that are later than bedtime or who has to feed her child at 12 but when i explain DS needs for routine and his sensory issues due to his autism i find they are more helpful and understanding!
By divulging the nature of DS issues I am helping him to find his place in the world. Nothing will ever change if we hide our children away for fear of prejudice. As mothers it is up to us to shape the world for our children and to educate others so our DCs can fit in and live full lives.

MoonlightMcKenzie Wed 30-Sep-09 08:40:19

Me, I tell everyone, am available for questions to those that are interested or make genuine mistakes and assumptions, and have a bag of weapons to use on those who make the wrong assumptions that could harm my ds'progress or life.

I want people to understand how to help him so that he gets support from all angles.

debs40 Wed 30-Sep-09 08:52:35

bonkerz - you put that so well. I think if we have that approach to our children's problems it will help them as they grow to discuss their problems openly and not feel ashamed.

I do feel for you and your family problems but I think autism is not something you can really hide - or at least it's obvious symptoms are not. I know that I need people at school, at the very least, to know about it so they can make the accomodations that my son has a right to.

troutpout Wed 30-Sep-09 08:56:44

No sorry...i don't get your thinking at all
I'm glad you have support of your mum's tough to be on your own with this.

linglette Wed 30-Sep-09 09:00:24


The OP has a different way of thinking about autism than you. She's clearly a good mother and doing her best like the rest of us.

She is her child's advocate just as you are yours.

saintlydamemrsturnip Wed 30-Sep-09 09:06:21

The danger in keeping it quiet will be when your son is older if he finds out from someone else. It isn't something to be ashamed of but he might think it is if he hasn't been told.

I mention this because I know someone it happened to. (He was told by another autistic child - and it did cause some problems and stress all round).

I recently discovered that severely autistic, learning disabled son knows he is autistic (which surprised me actually). He seems very interested in it.

AttilaTheMeerkat Wed 30-Sep-09 09:06:36

I'm not suggesting otherwise but to hide such a dx does not do her child or her own self any favours ultimately.

cory Wed 30-Sep-09 09:07:28

I am not qualified to speak here, since my dcs' disability is not autism, but I think if it were me, I would want it known for my son's protection.

If the school have been told he has a dx, they cannot legally exclude him or punish him for any behaviour that is caused by his disability; they have to first make reasonable adjustment to find a way to support him.

And his mates may well be more tolerant towards him if told that any different behaviour is not intentional or him trying to be mean. If he has been diagnosed as having severe autism, then presumably there are differences in behaviour to what you would expect from an NT child.

If the school is not told, then you have no claims on them through the Disability Discrimination Act if something does go wrong.

Your son will have to sink or swim like the NT children: fine if he can do it, not so good if one day he can't.

Otoh if this new school is better than the last, isn't there a good chance that they will also be better with special needs?

pagwatch Wed 30-Sep-09 09:52:48

I find this a sad thread too.

Autism is not a shameful thing. And to keep it secret inthe hope that ultimately he can be cured is about as close to denial as I can imagine.
My primary concern would be my son and for me teaching him that autism is not shameful would be important.

Other peoples opinions are annoying but I would not treat my child against my judgement because I was worried about what uninformed idiots would think.
And I would hate him to hear about his autism from somone other than me.

Simplistica Wed 30-Sep-09 10:12:07

As a parent of two with ASD, I ahve to say Atilla'spost best echoes my feelings

if your boy can't learn to cover his ASD (a very few can, most cannot and there is a link between ASD and toehr things such as depression and eating disorders, one of which my ds1 has, that are IMO as severe as HFA asd and more likely to be caused 9agin just IMO) byy an emphasis on fitting in) then you / we need to force society to adapt, not hide in a corner.

I get how you feela bout your Brother; I have a BIL I feel simialrly about becuase of lack of help- but I am not convinced DX hsing is the way to go.

MoonlightMcKenzie Wed 30-Sep-09 10:23:36

To be fair, we don't know the situation of the OP, or the community that she lives in, or the family context. I can easily see that in some circumstances the stress levels on the family can be less if the autism is generally less known.

I am lucky to have a supportive network of friends, a half and half family, and I am confident in my convictions and I'd say even growing in my role as a parent with an autistic child. I am lucky, - very lucky.

But why SHOULD we be campaigners for disability rights, why SHOULD we go on a rampage to change the world to make it more accepting for people with autism. I will do it, but it isn't fair to expect every parent to just because they have a SN child. They didn't ask for a life with this level of parenting responsibility, and they certainly didn't ask to suddenly become a political activist. I can understand the hiding and withdrawing mentality to be honest, however, I do hope that the OP can find a way to be a bit less affected by what people might think.

Simplistica Wed 30-Sep-09 10:31:16

Well no it isn't fair MMc but an awful lot of people have something thats their natural campaign- be it breast cancer, dementia,heart disease- without those affected picking up the reins nothing will happen, it's simply the way it is

MoonlightMcKenzie Wed 30-Sep-09 10:49:03

I know that Simplistica but perhaps it takes some people a bit longer than others to feel that it is their vocation. I don't think people need to feel THAT pressure as well as all of the other pressures that go with having a child with SN, nor the guilt.

The OP's attitude doesn't really do my ds any favours but like us all she is trying to protect her child and family the best way she can. Nothing wrong with challenging her assumptions of course, but I don't think we can be too critical, that's all.

I'd rather she came here and posted than run off feeling that one of her limited support networks has shut down I suppose.

linglette Wed 30-Sep-09 10:59:44

Exactly moonlight, exactly.

PerryPlatypus Wed 30-Sep-09 11:04:07

I generally only tell people who I think need to know, so to a certain extent I can see where the OP is coming from. It's the same with their asthma though so not a case of seeing ASD as something to be ashamed of.

I have to say though that I do tell anyone who is involved in taking care of them. This includes the school and the people who run any clubs or groups that my children attend.

The boys are generally treated the same way as the other children at their school. They certainly haven't been held back because of the staff knowing about their autism. Knowledge of the dx has meant that when things go wrong the staff know that there is a genuine reason for it and can adjust or adapt accordingly.

One thing I would say though is that expecting a child with ASD to either be cured or not stand out in any way is extremely optimistic. My ds1 is one of those children who seems to have moved along the spectrum to the milder end of ASD/HFA. He is doing very well academically, behaves well at school, and doesn't generally stand out much. Compared to when he was dx'ed at age 3 he is now a very different boy.

Even so, his ASD is still there. Sometimes all it takes is something relatively minor (to us) for the bottom to fall out of his world. I must admit that I'm dreading the time when puberty hits (he's 9).

It's good that your ds is doing well but I would be wary of putting too much hope on things always being straighforward.

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