to feel totally fobbed off re: ASD and DD

[AlmondAmy]

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.

hibbledibble it appears to be a postcode lottery thing for me. It depends where you're based as to whether you will be taken seriously or not. I have Scottish friends that have had their DCs dx'd there and then and friends in Hampshire who have had their DCs dx'd within 6months.
We are in Nottingham and have been fobbed off for the past 3 years whilst at the same time I've learned of children who I wouldn't even suspect to be on the spectrum who have been dx'd by the doctor. Having a supporting school will help tremendously especially if they are honest and upfront from the beginning. Ours hasn't been and as a result it has led to huge delays in accessing services of any kind and genuinely being taken seriously at all.

Thankyou irretating.

We live in south norfolk and have been able to access lots of services and have been told they diagnose very quickly even with very young children (we are waiting to see the paediatrician but have had lots of assessments via the health visitor that have been logged on to the paediatricians system as part of the pre assessment). Total postcode lottery.

Thank you snowgirl we live in a very deprived area, with generally poor services, so I don't think there is much hope for us

I wonder if NAS could help? Might be helpful to show gp / hv this:

www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/getting-a-diagnosis-children.aspx

And perhaps give them a ring. Girls are very different but actually I feel her behaviour is quite obvious.

She is suffering extreme anxiety, and sensory processing difficulties, which, if you speak to a person with autism is often the element they find the hardest.

To help you however, I wonder if she would respond to some visual time tables? Or just symbols when telling her what is happening.

Be strong and go with your instincts. My DD is just 4 and over a year into the system for diagnsis now. My eldest DS is 11 and has an Autism diagnosis. My HV said when he was little and I was concerned 'it can't be ASD he's lovely'. She's right he is lovely but its deffinately ASD too. He has imagination, so do many ASD children we know, which was another excuse thrown at me.

Have you done any of the online assessments to ask to put on your DD's file?

Did speach and language do a full assessment? With DD's assessment she refused to do the dressing up, had poor eye contact, couldn't recognise any of the emotional images (still a bit young anyway for this).

It was enough, with also having a diagnosed brother, to get an in nursery assessment.

What do you want from diagnosis? There are lots of reasons people pursue early diagnosis ranging from not wanting to be labeled as a bad parent, to needing help managing bedtime routine, needing help with physical development challenges, needing help with eating, litteral language issues so speach and language support.

A diagnosis is not the end of things either. Its just the start of a whole heep of new challenges to get the right support packages in place. At the end of the day behaviour is behaviour and sadly diagnosis or not you're going to need to be the one to pick your battles and work through which things to prioritise to work on managing.

Don't give up. Just keep gently plugging away until you're heard. Keep a diary of extremes of behaviour and daily challenges/ routines. Does your DD have good motor skills i.e. Hold a knife and fork correctly, jump, hop, catch a ball? When you're with similar aged children make notes of behavioual and reaction differences to show peer group variation. Build your own paperwork trail and take it back to the GP in 4-6 months asking for refferals for the areas you want assistance with.

DS got into a special Autism unit nearly two years ago. We moved areas partially in the hope of accessing more support. Its made the world of difference.

Both DD and DS enjoyed big jigsaws at a very young age. Both read early, both had a very good grasp of number at an early age. DD is pre school (starts september) but is pretty confident on her number bonds to 10, and knows various random multiplications because we've been running through them with my nine year old and she picks them up. She can confidently divide and group by single numbers. She can't understand why everyone is not her friend, eat when overstimulated, finds it very challenging to be presented with new foods, likes her food in the same order not touching on the plate(s).

Having a supporting school will help tremendously especially if they are honest and upfront from the beginning.

That's exactly it.

Imo ear?y diagnosis opens doors to access specialist support eg PECs, strategies to ease anxiety, sensory profiles and diets, and then paves the way for ear?y schooling using appropriate strategies. My school has a specialist preschool communication unit.

The difficult thing about autism is a large part of it is being unable to understand social interaction and communication. A child needs carefully structured input to help this - the actual difficulty or disability is their ability to 'get' communication etc - so no, your gp isn't really correct in saying a child who potentially has ASD will 'adapt'. This is exactly what the struggle with!!!

Have you asked your GP for a refferal for toilet training issues? This was one of DD's issues and it was added to her assessment to make her a 'complex case' for acceptance by the childrens centre for further assessments.

Wiping is still a big issue here (DS is mastering it most of the time at 11).

DD steadfastly refused to toilt train i went months and months of wet and soiled pants determined not to give in - battle of wills whether its Autism or not. She had some deffinate bladder control from about 18months. She would go all night with a dry nappy and in the day would fill her nappy just as we went out the door. Last summer we went to Iceland on holiday (first flight first big holiday loads of planning things to work through). We arrived at our holiday cottage DS found the toilet, used it, the DS2 did to, then DD did. That was it, toilet trained by flight to Iceland! Apparently little girls use big toilets in Iceland and carry on doing so on the return to the UK. Obviously not recommending Iceland as a real toilet training tool but suggesting it can just clic and acceptance of using the toilet can happen. Its just really tough the relentlessness of dealing with an able mind resistant to change. She has explained to us how annoying using a toilet is because you have to stop what you're doing where as when you where a nappy you don't. I can see the logic there.

Sorry but I disagree with the 'dx don't make much of a difference' comments. Why Ds remains undx'd we can't access services at all. For now he's under the Behaviour and Emotional DISORDER Team (HATE that word). This is a boy who when the Pathway Team came out to him on a home visit. He didn't make no eye contact. Didn't speak to them and when asked a question directly he simply growled in response.
Their appropriate suggestion to this was to send me on another Parenting Course.

Snowgirl, you are right, a dx makes all the difference. I'm sorry you're not getting anywhere. We use the term 'complex needs' now, better than disorder. And it's now autistic
spectrum condition for the same reason.

It certainly does take up to 2yrs and longer.
I approached the NHS with concerns for my ds when he was 14mths. I was brushed off as an anxious mother to my pfb. I had queues of people telling me there was nothing wrong. I actually thought I was losing the plot, but I knew something was wrong.
Ds was diagnosed with ASD at 6yrs old but which time it was so noticeable that he barely needed the assessment.

I did lots of things blindly a lot of the time to support him which did help, but the reality is, that things would have been better with targeted specific support as a result of earlier diagnosis.

Op if you can afford private Daphne Keen has an excellent reputation especially with girls. Girls do present differently with ASD and in the past it has been said that ASD was less prevalent in girls. However, I think it's more a case of girls not been assessed correctly.

Either way op, hope things get better for you soon and your dd

My boy was similar to your child but ate more of a variety of foods. He was diagnosed within 6 months at the age of 4.

I've tried to get hold of Daphne Keen sooooo many times as I know she has a huge waiting list. If anyone has any Harry Potter tricks to get her PA to answer calls / emails please send them this way

But most of all OP. Push for EVERYTHING now. Because If you end up with an unsupportive school...

I have to say that even if you get to see a paed they could well still dismiss it . I really don't know what the answer is I'm afraid.

My 6yo DD has a tick list of ASD traits as long as your arm, and she runs into roads and trashes the house. Because she's bright and behaves at school and was able to sit nicely through a 90 min assessment at the NHS hospital the paed said she was fine and it was just my parenting that caused it .

I hope that my question 'What do you want from diagnosis?' Hasn't been read as dx makes no difference. I agree it makes things a lot easier and opens doors if you know which doors to go to to open. My question would have been better phrased as what is the support you most want/ need?

With DD even though I haven't yet had a diagnosis I've had a lot more support. Mainly because I've been through the process with DS I've been able to ask for relevant help and access it.

That was the angle I was meaning to get across. If you aren't getting anywhere on the diagnosis front don't give up or stop pursuing the assitance one. All the reports generated again act as evidence towards your ongoing battle to get the diagnosis.

You could ask for help with toileting issues, a CAMHs refferal for anxiety (including the self harm) - DD has a CAMH's referral for her probably Autism related anxiety, if she has any physical development issues then physio and occupational therapy.

Occupational therapy were great with DS and I when he was young. I learnt all about how i could help his very delayed motor skills (he's dyspraxic) we played 30 mins (minimum) lego or playdough every day. This then helped him learn to hold his knife and fork and with his writing and correct pencil grip.

DD has also had a significant physical delay but I started doing the fine motor skills development daily with her at 2 as part of daily play and her fine skills are age appropriate.

It sucks doesn't it meglet :(

snowgirl29 quite a few people on the SN boards have used her and they may have some potter tricks?