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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

For thinking Autism

52 replies

LithaR · 28/04/2014 21:42

My ds of 4 years has been having some issues. He has severe speech and language delay, he has to have physiotherapy at nursery. He slams doors for comfort and flaps his hands when excited. I'm trying to push for more assessments to be made but my family say not to, to avoid him being stigmatized with autism.

I want my son to get the best start.

Would I be unreasonable to push for an assessment despite any stigma.

OP posts:
BeyondTheVirtualActivist · 29/04/2014 11:27

Seriously, pop a thread up in sn children, the posters there are wonderful :)

HolidayCriminal · 29/04/2014 11:34

What happens if OP gets him assessed but there is no diagnosis? I mean, what backup plan should she have?

Goldmandra · 29/04/2014 11:36

The people who don't like children to be labelled generally don't understand the condition or how the support works. Worrying about stigma is a sign of ignorance.

I know dozens of other parents of children with diagnoses and none of them regrets getting their child assessed.

mummytime · 29/04/2014 11:51

There isn't much "Stigma" IMHO.
Being labelled as Autistic is preferable to him being labelled as: Violent, Uncontrollable, Rude, and Weird. And you as: Bad and lax parents.

I'm not saying that an Autistic child necessarily shows behaviour that is: Violent, Uncontrollable, Rude, and Weird; just that those are the kind of labels that can be attached to the behaviour that shows itself when they are handled in appropriately and expected to conform to norms they neither understand or can adapt to. In fact I would say they are really likely to be: Upset and Anxious.

The right label can unlock a lot of doors to help.

TillyTellTale · 29/04/2014 11:53

The idea of "stigma" to diagnoses assumes that
a) children/adults with autism are always going to magically get to the point where they don't seem 'odd' to judgmental gits without professional support, and;
b) that sharing one's medical details is compulsory.

Both A and B are complete and utter bollocks. The kind of people who judge someone when they find out they have an autism diagnosis are no nicer to autistic children and adults without diagnoses.

HolidayCriminal · 29/04/2014 11:58

I can see why people who get diagnosis have no regrets. But what about people who don't get a diagnosis. What do they do next?

Goldmandra · 29/04/2014 12:09

But what about people who don't get a diagnosis. What do they do next?

Do you mean if they have an assessment and the outcome of that isn't a diagnosis?

The assessment process usually involves observations, reports and recommendations from a range of professionals which can help parents better understand their child. The recommendations can inform educational support even if the difficulties don't fit a certain condition.

There is also a significant number of children who don't get a diagnosis on the first assessment but do get one on reassessment later on. No diagnosis doesn't mean you come away with nothing.

HolidayCriminal · 29/04/2014 12:11

Are schools obliged to follow the recommendations made if there is no diagnosis (ever made)?

Goldmandra · 29/04/2014 12:23

The SEN Code of Practice, which is the guidance that schools are expected to follow, makes it clear that the needs of the child should inform their support, rather than their diagnosis.

That means that, ideally, no child should ever need a diagnosis at all because their support should be guided by the needs identified in their reports.

In reality the diagnosis ends up making it easier to get support with less of a fight.

I'm not sure I've explained that very well, sorry.

ShouldBeDoingSomethingProducti · 29/04/2014 12:27

I'm sorry your family are making this even more difficult for you.

Your DS needs all the help he can get & the sooner the better - he can't be helped until they know what his needs are.

Brushing this under the carpet isn't going to make it go away - no matter how much they want it to.

You are his Mum and you have to do what is best for him (& you!!) not pander to whatever outdated ideas they have.

Good luck with getting the assesments done and getting some support.

mummytime · 29/04/2014 12:48

Umm my DDs Psychologist said he often saw Dads who were unhappy about the diagnosis, and when they came in he could see they had "traits" themselves.
If people haven't experienced the system lately they may not realise how much it has moved on. It is no where near perfect but on the whole it is a lot, lot better than 20 years ago or so.

rocketjam · 29/04/2014 12:53

I agree with Wilson and the others. Although my DS is not on the autistic spectrum - he has a severe speech disorder and dyspraxia - as soon as we had a diagnostic many doors started to open. Support groups, more speech therapy, help at nursery and school, direct and indirect intervention. And support from other parents in similar situation.

WilsonFrickett · 29/04/2014 12:57

I think it can also unlock a door in you - and to answer your question holiday that can be one of the benefits of an assessment that doesn't result in a diagnosis. You spend a lot of time looking at your child's difficulties through a diagnosis period and thinking of different routes to help them. It makes you think of your parenting in a different way.

Certainly once I began to admit to myself that 'something isn't right' I let go of the guilt that it was me, my parenting, my issues, the way I did things. I also let go of some of the stubbornness - I will make this child do things my way.

The diagnosis was almost secondary to that (because in all honesty, DS really doesn't get much help). It changed me, and that can happen even without diagnosis iyswim.

Goldmandra · 29/04/2014 13:00

Good point mummytime. I know a few families where the father has found it harder to accept the assessment and diagnosis process and lots of them are very similar to their DCs. However, I think that a few years down the line they have generally come round and can see the value of the dx in getting support.

BeyondTheVirtualActivist · 29/04/2014 13:05

Count my DH into that. And my parents approach is to ignore it to.

"Its normal, you did that when you were little" umm yes, and odds are im asd too mum

Or "there werent so many diagnoses in the olden days, they were just naughty kids". A favourite of the daily mail too, that one

Goldmandra · 29/04/2014 13:10

they were just naughty kids

Oh yes because being labelled as naughty is so much better, apparently! Confused

WireCat · 29/04/2014 13:15

My son was diagnosed as autistic yesterday.

It's only ignorant people who,think it's a stigma or a label.

Ericaequites · 29/04/2014 18:56

I have Asperger's. I was diagnosed at 40. My parents hauled me about to different doctors and therapists, trying to find out what was wrong with me. No one regrets early diagnosis and intervention for her child.

Cailleach · 29/04/2014 18:59

I was 36 before I was diagnosed. I wish that had happened much sooner.

Please get her some support, it will mean the world to her to know why she struggles with certain things.

dietstartstmoz · 29/04/2014 19:15

Hello OP. I will try not to rant. I have a 6 year old with autism. There is no such thing as a 'stigma/label'. Autism is a lifelong disability. Whether you push for assessment or not at this stage will not change whether your DS has it or not.
I strongly feel that if your child requires help you pursue that help. If your child had a medical or physical disability you would get help wouldn't you? So if it is a developmental disability why would you not seek help.
The best thing you can do for your child is to seek an assessment of his needs. How will he cope in school otherwise? How will he cope in life? At what age would your family agree was the right time to seek an assessment, 5, 7, 10? There is no stigma, other than their preconceived ideas of what autism is.

Eliza22 · 29/04/2014 19:25

I always knew, even though he was an only child, that my ds had something different about him. He's now 13 and was diagnosed with ASD. He's high functioning but has additional OCD. I was told repeatedly by my now ex-DH that "labelling" him was a bad thing. Without his label, his Statement, his treatment, his mainstream school with ASD unit attachment, his TA and his special interventions when necessary, he would never have gotten as far as he has (so far).

It's essential that if your ds has these issues, that he is assessed and if help is needed, it begin ASAP.

Thumbwitch · 30/04/2014 01:51

You cannot say categorically that "there is no such thing as a stigma/label" regarding autism because SOME people do have that reaction to it, as the OP's parents clearly have. The Daily Fail likes to feed in to this as well by categorising autistic people as having violent, if not criminal tendencies, with no social skills etc.

It is, of course, a nonsense - but it does exist among the ignorant bigoted Daily Fail believers, so it's a nonsense to say that it doesn't.

Thumbwitch · 30/04/2014 01:52

Two nonsenses in that last sentence, but never mind.

Goldmandra · 30/04/2014 07:46

Thumbwitch, you're quite right, stigma and bigotry do exist about Autism but I think the point is that you won't come across more of it if your child gets a diagnosis.

If the assumption is that they are naughty or aggressive they will probably experience more labelling and stigma and that makes a nonsense of the fear of assessing and labelling a child with a neurodevelopmental disorder. The only people I know who regret decisions about assessment wish that they had pushed for one earlier.

I know a boy in his early teens whose father has been refusing to allow him to be assessed for years. I know this because of professional involvement, not gossip. He has terrible trouble academically and socially, particularly with bullying in school but he isn't allowed any intervention. He seems to be well on the way now to a life involved with the criminal justice system now and that is so unnecessary. Worrying about him being labelled hasn't helped him one bit. Quite the opposite in fact.

Eliza22 · 30/04/2014 08:37

Goldmandra that is so incredibly sad. You make an excellent point. Whether there's a stigma or not, intervention where needed is key.