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to ask for your tips on getting your potentially ASD child assessed?

(30 Posts)
PeppaPug Mon 01-Sep-14 22:29:36

I have a doctors appointment on Wednesday about my 2 yo DD and am worried I won't be taken seriously. I'm not the most assertive of people but I'm pretty convinced DD has ASD after having 4 other children to compare her to and having worked with children with ASD before.

It's beginning to really affect our lives. She has an extremely restricted diet, barely eats and isn't growing. She pinches and scratches herself until she bleeds without realising when she's anxious. She cries at loud noises and even vaguely strong smells to the point where I'm struggling to cook without her crying and gagging throughout because of the smell.

She hates anyone bar me, sometimes DH and her siblings being in close proximity to her and grumbles constantly when out. She has a bag of belongings she unpacks and checks at least 25 times per day - getting to the point where we're late because she can't leave without checking her bag repeatedly. She collects, washes and orders stones in size. She can say about 5 words but forgets them and learns 5 new ones every few weeks.

She has to be approached in a specific way or it leads to complete meltdown. I'm dreading the GP trying to fob me off with the usual every child is different, it's the terrible twos etc. I have been in tears today because she physically can't leave a room without checking her bag, she's only eaten two slices of apple, she fell over because a tree rustled in the wind, shes scratched all her leg red raw because she doesn't like the noise of the shower.

AIBU to ask how you got your voice heard?

SolidGoldBrass Mon 01-Sep-14 22:33:31

I can't offer much help but lots of sympathy. It might not be as bad as you think - unless you know your GP is useless.
I am at the early stages of getting an assessment for my DS who is almost 10 and GP has been OK so far. He has just asked if I can get the school to put their concerns in writing as it will speed up the assessment apparently.
Does your DD go to a nursery or anything like that?

ICanSeeTheSun Mon 01-Sep-14 22:36:11

How about printing off what you have said here and giving it to the doctor to read.

HavanaSlife Mon 01-Sep-14 22:37:56

Has she been for her 2 years check? Is your hv easy to talk to? I know people on here can be a bit off about them but mines really good

NoHaudinMaWheest Mon 01-Sep-14 22:41:30

The advice about printing off your concerns or making a note of everything you notice between now and the appointment is good.

There are lots of us on the SN boards who have been where you are now. If you post there you will get lots of advice and support.

BlackeyedSusan Mon 01-Sep-14 22:42:12

write down everything. mention you have worked with children with ASD.
google early signs and write down any that dd has. good luck.

morethanpotatoprints Mon 01-Sep-14 22:45:42

Good luck OP
After ds2 had almost completed school at 17 he got a diagnosis.
Seems like he wasn't just a naughty boy, badly behaved teenager and trouble maker.
This was despite me constantly banging my hand on the desk, depending on where you live will depend on how many years your diagnosis will take.
Hope you aren't NW

littlepeas Mon 01-Sep-14 22:48:43

My GP looked at me in a confused way when I used the acronym ASD, so I understand your concern! You don't have to go through the GP as far as I'm aware - my ds saw SALT initially (referred through HV) and then nursery referred him to IDS who came and assessed him there. The specialist SALT then made the referral to clinical psychology. Have you spoken to your HV?

ArsenicyOldFace Mon 01-Sep-14 22:49:52

If unsuccessful with GP. Or if he suggests a wait and see approach of any ilk;

Ask your HV to visit. Explain all of the above to her. Try to access nursery vouchers for 2 year olds (however bad an idea nursery seems). Go through the motions. IN that way you can collect professionals who have something solid to report on, even if it just meltdowns and things you have explained.

ArsenicyOldFace Mon 01-Sep-14 22:52:55

HVs can make lots of useful referals, and the reports from those referals can help build a picture.

Any speech and language concerns?

I also requested (and got) dietician for a very similar sounding DC (v restricted diet, v slim) annually for years. Pre and post dx. You can try that.

PeppaPug Tue 02-Sep-14 08:44:45

She has about 5 words that I understand but no one else would. She loses words she previously had. She always has around 2-3 foods she might eat but often eats very little and is very specific about how it's prepared - I.e. If toast was a shade too brown it'd make her gag.

HV is useless - said she's lazy because she has older siblings to speak for her (they don't) and suggested more messy play to encourage her to eat hmm

I have written a list of concerns and hope that'll be enough. Not filled withcconfidence though as DS had recurring ear infections (11 in 10 months) and hearing loss and GP still looked at me like I was overreacting when I asked for a referral to ENT.

PeppaPug Tue 02-Sep-14 08:49:53

How did the dietitian help Arsenicy? DD will grumble in the kitchen at cupboards/the fridge but says no to anything offered. She won't touch food or cutlery. She'll help cook non-smelly foods but won't try any. Will sit at the table and watch us eat but push her plate away immediately. One day she might eat a whole orange and I'll be excited it's a new food she'll eat but then she'll never eat it again. I just am at my wits end with what to try.

chocnwine Tue 02-Sep-14 09:02:58

make a list of all your concerns. mention that she loses words.

have you done the M-CHAT? do it and if it does flag anything up, then take a print out with you.

Can you take your DP with you? I was only referred after I took DP along.

I started going to GP and HV with concerns when DD was 15 months old and we were only referred when she was 3 (she has now a dx of severe autism - and despite here severe presentation, it took so long to even get referred). you need to be a pita and push for things. good luck!

you can do the M Chat online HERE

chocnwine Tue 02-Sep-14 09:04:36

and in any case - sideline the HV if she is not helpful. ours was useless, useless, useless. from my experience, they know nothing about ASD and are often only an obstacle in the way of getting the correct referrals.

TheVioletHour Tue 02-Sep-14 09:08:20

Check if you can self refer to salt or if they have a drop in some parts of country a will offer this. If you do go down salt route they will probably suggest dd has a hearing test

sunshine175 Tue 02-Sep-14 09:17:25

Such stressful time for you. Losing words or skills is red flag for referral so make sure you get that heard by GP. Keep a diary and show that even if it is just a day or two. Video or record behaviours on your phone/camera. This can be helpful if you get a referral. It can be a long process. And come over to the SN boards where you will be very welcome.

ArsenicyOldFace Tue 02-Sep-14 10:30:06

How did the dietitian help Arsenicy?

She was able to comment that the nature of the issues around food (extremely limited range of foods, texture/exact level of crunchiness critical, foods mustn't touch on plate etc.. v similar to your DD in fact) was consistent with/ suggestive of an ASC. It did help.

She also reassured me that his diet, whilst wildly eccentric, as more than nutritionally adequate, which was more reassuring than I anticipated.

PLUS, it staved off any hint of a possibility of a welfare concern re the skinniness (a worry of mine).

ArsenicyOldFace Tue 02-Sep-14 10:32:34

Have you spoken to the NAS helpline? In the end I got a recommedndation from then re. NHS clinic and went back to the GP and told him exactly who I wanted to be refered to and why.

That worked. (Third attempt)

ArsenicyOldFace Tue 02-Sep-14 10:34:19

I just am at my wits end with what to try.

Oh I know. It's such a mum thing to just want to feed them, isn't it? flowers

x2boys Tue 02-Sep-14 10:38:37

I have a four year old son with ASD ask for a referral,to the paediatrician ,speech and language also ask f you can be referred to the portage service these were all the people involved with my son ,he was diagnosed at three and a half good luck.

BarbarianMum Tue 02-Sep-14 10:40:12

Change GPs if you have to.Honestly, it can really help.

The details you have given are more than enough to warrant investigation and any GP that thinks otherwise needs binning, fast.

Tell them you want a referral to a developmental pediatrician and why and if they um, ah or say no insist on a second opinion

FatherSpodoKomodo Tue 02-Sep-14 10:48:15

Is she due to have a 2 year check? I was sent a questionnaire for my DSs 2 year check And when I had to answer no to almost every question about his development the HV referred him straight to the paediatrician. He was diagnosed at 2.5.

I'm trying to get ds5 diagnosed so went to the GP to get referred. I wrote everything down, made notes on my phone whenever I noticed behaviour that could be connected with ASD. Assessments are still ongoing with him, but the paed said he definitely has traits.

Make notes, and if you are able perhaps video some of her behaviour.

orangepudding Tue 02-Sep-14 10:59:37

Ask your GP for a Paed referral.

Even if your GP does agree woth your ASD concerns the fact your DD is not growing and hurting herself should be enough of a concern to get a referral.

My GP didn't want to refer my DS when I was concerned about his development, I got really upset, cried and begged. He reluctantly referred but said the Paed would refuse when they received it. They did, he was seen four months later and she has refered him to a Neurologist, OT and physio.

You really have toget used to pushing!

Sunnymeg Tue 02-Sep-14 11:00:30

As others have said make a list of everything that causes you concern and be prepared to insist that your GP makes a referral. DS has Aspergers and from about 9 months I knew something wasn't right. I wasn't taken seriously by my GP and HV. It wasn't until school insisted on a referral when he was in reception that anything was done. I wouldn't wish what I had to go through on anything. Good Luck

LiverpoolLou Tue 02-Sep-14 11:01:56

I would say look very carefully into all aspects of AS and how they can present in real life situation. Both good and bad characteristics.

My DD has AS but didn't get diagnosed until she was 15. I first raised concerns when she was 2 but diagnosis was missed (and on many subsequent occasions too). With hindsight I think a lot of this was because there were so many behaviours which I never mentioned because it never occured to me that they were relevant. For example, who would have thought that needing to cover every inch of her picture with paint was connected to being terrified of the sound of the lawnmower. Both of which are behaviours associated with AS.

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