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to feel totally fobbed off re: ASD and DD

(47 Posts)
AlmondAmy Sun 07-Jun-15 17:40:50

DD is 3. She can't speak comprehensibly, she eats 4 foods only, she is sick over strong smells, she hates affection, she hates anyone touching her, she is terrified of the wind and of anything moving towards her, she obsessively organises things, she hardly ever responds to anyone but me etc etc.

I've tried to access support via her GP, HV, speech therapy and portage but they have all alluded to the fact that they think DD may just be 'strong willed' rather than showing signs of ASD. Because she enjoys listening to stories (for up to 1.5 hrs at a time), can do 100+ piece puzzlesiindependently, draw people, sort in colour/size/shape groups and is very cautious her HV says she doesn't think she can have ASD because she is 'too capable.'

Aibu to think that just because she's not running into roads and trashing the house doesn't mean she doesn't have ASD? She is DC4 and I was a SENCO pre-DC so I have seen enough DC to compare her to.

aintgonnabenorematch Sun 07-Jun-15 17:42:50

Has she been assessed formally?.

irretating Sun 07-Jun-15 17:45:07

HV says she doesn't think she can have ASD because she is 'too capable.'

Does your HV not know what the S in ASD stands for?

AlmondAmy Sun 07-Jun-15 17:49:42

The GP begrudgingly agreed to refer her but they don't formally diagnose here until DC have spent 3 months in an educational setting so the referral was rejected as not having enough supporting evidence. Meanwhile DD is scratching herself to the point of scarring at any change in routine and hardly eating.

Sirzy Sun 07-Jun-15 17:53:26

Does she go to a pre school? They may be able to help access services.

Good luck!

snowgirl29 Sun 07-Jun-15 17:53:26

'just because she's not running into roads and trashing the house doesn't mean she doesn't have ASD'.

OP. My DS does BOTH of these things daily and he's still not been formally assessed either! Despite ticking the whole ruddy list his Paed has concluded he doesn't have ASD 'because he talks to them okay'.

You have to have the mental strength to fight for a proper assessment for DD and believe me I've found they'll put you off at every turn and they'll put you through the wringer in the process ��

Can you change HVs? Is there another GP you can badger?

Sirzy Sun 07-Jun-15 17:55:35

If you post on one of the sn boards then some of the posters with lots of experience who don't come over here may have some more advice to.

MamanOfThree Sun 07-Jun-15 17:55:43

sad
Unfortunatly, sometimes, you are better seeking a private diagnosis instead (Bear in mind that even if there were assessing, it would probably take 2 years+ for yoo9u to get a diagnosis).

In the mean time, is there anything yoiu can do to hel her wo the GP etc...?

snowgirl29 Sun 07-Jun-15 17:56:49

So no I don't think YABU but I've found this is the way of the world for quite a few mums now. Badger them and push for it now why she's still young as early intervention is paramount. DS is now 6 and everything is just documented as 'Behavioural and he's the naughty kid'. hmm.

postmanpatscat Sun 07-Jun-15 17:57:07

Is she going to a school nursery or pre-school in September? I know it's another wait but then at least you'll have someone to fight your corner with you. (I'm a primary school SENCo and I agree with your concerns).

Rainicorn Sun 07-Jun-15 17:57:27

Your HV sounds just as helpful as mine was. She said there was no way DS2 had ASD as he knew the difference between hot and cold. At the time he was standing on a rug, hopping onto cold laminate flooring, and back onto the rug. Continuously during her half an hour visit.

Op, my DS2 was dxed when he was 2.6 and was assessed during nursery, so the education thing is bollocks.

irretating Sun 07-Jun-15 17:57:51

To expand on my earlier comment, I'd be questioning how much about ASD your HV knows about, because Autistic Spectrum Disorder covers a whole range of different conditions. My son is ASD and he's very capable and in mainstream education, he wasn't diagnosed until the end of primary as it was at this time that his little quirks started to become bigger issues that were affecting his education and ability to form friendships.

Sometimes you do have to fight for a diagnosis but keep pushing. If you haven't joined a support group then do so, I was able to join before my DS was formally diagnosed so I should think you would be able to also, I got some brilliant advice on how to present evidence to the doctor.

Clarella Sun 07-Jun-15 18:00:33

She's clearly capable but ASD (ASC now) IS a spectrum.

I teach children with autism and the activities they often like most are exactly those you describe. The activities have a predictable beginning, middle and end, a start and finish, and some children with autism crave this, others need it to be presented to them to help them to begin to engage in learning.

When I read stories half are almost on top of me, half are doing their own thing (but listening as peripheral learners)

I don't think Hv are experienced enough, and I know some children are diagnosed earlier. Either way she's displaying concerning behaviour which they must address really. Self harm is worrying.

I'm sorry you have this stress.

Have you tried contact a familiy? They might be able to advise best steps, as well as the autistic society.

I think gp referral might be nec.

snowgirl29 Sun 07-Jun-15 18:00:54

irretating what kind of evidence did you present to your doctor? I've presented six months behaviour diaries twice before and they haven't made a Jot of difference.

Clarella Sun 07-Jun-15 18:02:10

Sadly, I think it's usual to leave things till a little later dx wise, I'm surprised so and Lang are not supportive?

AlmondAmy Sun 07-Jun-15 18:02:20

She has a place at pre-school but I don't see it going well. She isn't toilettrained, her poos aren't solid because of her limited diet and so even if I miraculously train her over the summer then wiping would be disastrous as she freaks out at mess. She won't even let her dad change her, GP says she will learn to adapt at pre-school, pre-school says I'll have to consent to them restraining her to change her.

snowgirl29 Sun 07-Jun-15 18:02:32

But yes to second an earlier poster if you can afford a private dx I'd go down that route instead.

Theycallmemellowjello Sun 07-Jun-15 18:02:53

Sorry for my ignorance, but is there much they can give you in the way of support before you get to nursery?

Theycallmemellowjello Sun 07-Jun-15 18:03:43

*pre-school, rather

snowgirl29 Sun 07-Jun-15 18:04:15

I'm sure someone here or no the SN's Board would be able to tell you if a Statement can be done before DD starts Nursery. I know you have a legal right to ask for one yourself. Parent Partnership are a wonderful resource.

Clarella Sun 07-Jun-15 18:06:14

Argh I really feel your frustration sad

Gp doesn't seem very with it - can you request a referral?

Mustard969 Sun 07-Jun-15 18:09:28

Girls with ASD tend to different to boys with ASD. Girls can be social chameleons to a certain extent.

There was a really good post recently. I'll try and link it.

Fairylea Sun 07-Jun-15 18:11:14

Hi op.

Here's my thread - my son is 3 and some of the ideas and services may be of interest to you - www.mumsnet.com/Talk/relationships/2393965-My-family-is-falling-apart-severe-autism-disability-of-child-related?pg=1&order=

Admittedly my son is very different to your dd so I can see why it may be more difficult for you to access some of the services.

If I were you I'd write a letter to your gp asking for a referral to a different paediatrician stating your concerns. If this is an area postcode lottery thing then by all means take my own thread along to an appointment and ask why some dc like mine are able to access all this support and diagnosis without any nursery or pre school attendance at all.

I feel your frustration.

Mustard969 Sun 07-Jun-15 18:11:17

www.mumsnet.com/Talk/special_needs_recommendations/2311467-Support-thread-for-women-with-suspected-diagnosed-self-diagnosed-ASD-or-ADHD?msgid=54631013#54631013

It's a really interesting thread! Lots of info

hibbledibble Sun 07-Jun-15 18:12:00

maman does it really take 2 years to get a diagnosis of ASD on the NHS? That is shocking.

We are currently on the waiting list to see the child development team. (I'm not suspecting ASD specifically, but other issues). Is it really that bad?

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