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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

TeenAndTween · 28/04/2014 21:45

Stigma is not an important for now.
Getting appropriate help for you DS is.
Ignore your family.

smartypants1000 · 28/04/2014 21:48

YANBU, or would not BU. I think it's far more stigmatising to avoid an assessment because of the word "autism" - if they thought he might have a hearing impairment would they say the same? I don't think so. If ds is on the spectrum, the best thing that can be done is to find that out, so that supporting him in the right ways can begin - not just your family, but teachers, medical people, etc, might need to be helped to understand him and help him - a label will help with that. Also, if he needs extra support at any point, the diagnosis is going to be necessary.

littlegreengloworm · 28/04/2014 21:54

I woud push for am assessment. Maybe you don't need to tell your family everything all the time. It's just that they might mean well, but your the child's mother and know him best. Early intervention is crucial.

littlegreengloworm · 28/04/2014 21:54

You're

lollerskates · 28/04/2014 21:56

Get him assessed. My cousin has autism (diagnosed in his late 20s) and his mother chose not to get him assessed when he was younger, despite knowing that something was different about him, because she didn't want him to be "labelled." I believe his life would be a lot better and happier if he'd been assessed and diagnosed when he was a child.

YouTheCat · 28/04/2014 21:58

Get him assessed.

The only stigma attached to autism comes from ignorant twats.

If he is assessed he can access the help he needs and so can you.

TaliZorahVasNormandy · 28/04/2014 21:59

Get him assessed, he'll get what he needs with the assessment.

I hate this stigma around autism, my DN is Autistic and DD is possibly Autistic too.

Its better to do it while they are younger, they can build up the necessary tools for adulthood.

Dawndonnaagain · 28/04/2014 22:02

I have three children on the spectrum. Please get him an assessment, it will help you both.

Aeroflotgirl · 28/04/2014 22:03

Definitely push for assessment, ask your SALT to refer your ds to a paedritrician or ask GP for a referral. Your needs of your ds come first, you don't need to tell your family anything yet. Mt dd 7 has ASD, I felt the same as you, I had to accept help eventually as I would not be doing dd any favours, she needed help. She us doing very well at her Autistic school, and was dx at 6.

Shakirasma · 28/04/2014 22:05

A diagnosis, a label if you like, is the key to getting your DS the help and support he deserves.

I would definitely push for assessment, if it is autism then he's not going to grow out of it, it's not going to go away. But the right support as soon as possible will be invaluable to him.

Who exactly are your family worried about wit this so called stigma? your DS or themselves?

ShakesBootyFlabWobbles · 28/04/2014 22:11

I would push on with the assessment route and ignore the concerns of stigma from your family. If he isn't, then you are just ruling it out, and the assessment may pinpoint something different that hasn't been considered. My DN is autistic and it took about 3 years to get to diagnosis due to it being at the milder end of the spectrum, so I wouldn't delay. My sister was able to get a full time TA at mainstream school for him even though he didn't have a diagnosis. Best of luck

ICanSeeTheSun · 28/04/2014 22:18

My DS is asd.

You can't get help and support off HCP without the Dx

Early intervention with asd is the key to getting the right treatment.

mineofuselessinformation · 28/04/2014 22:31

Please do push for an assessment. It's the only way he (and you) will get any help.
There really is no stigma any more, it's a condition like any other.
The saddest thing I've ever known of is a friend who has known for a very long time that her dd is on the autistic spectrum, but never had her diagnosed. The whole family struggles as a result - it is constantly the elephant in the corner. They have no peg to hang her differences on IYSWIM? They just don't talk about it...

Kafri · 28/04/2014 22:35

What's important is your son and what will help him not the label or the stigma.

A diagnosis is important for getting the help he needs to live his life as a little boy so you need to do whatever it takes to push fir assessments and help.

Early intervention can make the world of difference with asd but be prepared for a battle.

In my experience (teaching in a school for kids with asd, ld, and challenging behaviour) the parents that shout the loudest get listened to by the health professionals. It's wrong, completely wrong but I've seem it time and time again from diagnosis through to things like respite care.

Vikingbiker · 28/04/2014 22:37

I know lots of young adults with autism. Having a statement really helps them understand themselves. Life is hard enough already and it really helps to be able to understand their own condition. A statement also helps other people work out how best to support them. Being statements is really positive!!

Vikingbiker · 28/04/2014 22:41

Slightly different but for years my sister felt thick, did badly at school and struggled with various life skills. Then at 35 she was diagnosed with severe dyslexia, then received the correct support to complete a degree. . It's been life changing for her and confidence wise, she seems stronger. It's such a shame her condition wasn't recognised while little, it would have saved decades of pain.

x2boys · 28/04/2014 22:43

My ds is also autistic he is nearly four I was in denial for a while I found it really difficult to accept but ultimately I agree with others push for assessment the earlier the intervention the better .

BlackeyedSusan · 28/04/2014 23:17

pop over to the special needs children board. it is lovely over there.

WilsonFrickett · 28/04/2014 23:24

Please get him assessed. Children with undiagonsed SNs are stigmatised all the time. They're the naughty kids, the weird kids, the kids no-one wants to play with because they haven't been taught the tools they need to get on with their peers.

You can have a negative label, or you can have a label that helps you get support and understanding and help.

Your family are scared probably, and god knows I don't blame them for that. But do you think doing nothing will help your boy?

MedusaIsHavingaBadHairday · 29/04/2014 00:09

Get him assessed.. ignorant people are scared of the word.. the reality is as variable as every child!

My DS2 has autism.. he is also a lovely young man of nearly 17, who everyone likes because he is gentle and kind. He was once a severely speech delayed flapper, but now he is able to hold a conversation (mostly on his obsessions!) goes to a special needs college, does work experience...

Without his 'label' he would never have received the specialist education he needed, found the friends (he has a couple of real friends.. other 'special' and fabulous kids) he has, become the amazing, unique, autistic person he is.

Start the ball rolling now :)

Original poster

LithaR · 29/04/2014 01:18

Thanks for the replies! I knew there was something up when he stopped meeting his milestones like other boys. He first walked at 18 months. He's a lovely boy, but very set in his patterns.

Trying to get more help for him, but not much help without a diagnosis :(

OP posts:

Thumbwitch · 29/04/2014 01:38

Ignore your family, they are being spectacularly unhelpful and somewhat ridiculous about it. Get the assessment done, and don't bother telling your family what you're having done until it IS done as their opinions are not useful to you at this point.

Good luck :)

WilsonFrickett · 29/04/2014 10:43

Unfortunately despite the rhetoric of 'doing the best for every child' it's now almost impossible to get help without a diagnosis. And even with a 'lesser' diagnosis it's getting harder. We're revisiting DS diagnosis as his support has been withdrawn bc he 'only' has social communication disorder, rather than full blown autism

MissDuke · 29/04/2014 10:57

When I told my parents I was taking dd to the gp with the same concerns, my dad was gutted. He later rang and said a diagnosis would restrict her so much with employment. I cried my heart out, he seemed to think I was doing it just for myself. I partly was, I needed to understand why she does the things she does, but mainly it was because she was struggling so badly in school. What would her employment options be if she gets a poor education and her self esteem is in tatters? So I pushed on but discussed it very little with my dad. I still get upset thinking about his reaction.

fairylightsintheloft · 29/04/2014 11:01

my son (4) is sort of halfway to a diagnosis and it is so much easier now when he behaves in certain ways at his swimming or gym class that I can say that he is suspected ASD and can we do x or y to help him stay in the class. they've been much more accommodating about it since then, rather than just seeing him as being naughty or unsettled. We are still getting out heads round it, trying to sort out what is him and what is autism IYSWIM and the grandparents are also not really sure what it means but we are so relieved that we can now tell people who kept trying to reassure us that "all 4 year olds do x sometimes, he's fine" that there actually IS more to it. His school have been fab even before his initial assessment so we can only hope that he will continue to be supported there. Do start the process though. It took us 3 months to see a paediatrician and now we face a 12-18m wait for the full diagnosis.

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