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Daughter with possible ASD. Advice welcome please...

(16 Posts)
newnamechange84 Tue 02-May-17 17:32:37


My DD, 4 this July, was reffered to see a paediatrician last year by her nursery school teacher as it was felt that there were some problems with communication, concentration etc. Teacher was even considering immediate referral to EP at the time as issues in school were so bad. The teacher suggested dyspraxia but we saw a physiotherapist who assessed DD and said that what she saw during the assessment didn't correspond with a diagnosis of dyspraxia. Nursery teacher was shocked as she felt this was the most possible answer. Teacher an TA's have been amazing since the start with DD, supportive and more.

This morning we saw a very experienced Paed, who has worked in this sector for plus 30 years, I'd say. She spent an hour with my DD, observing her and speaking to me and at the end of the appointment she said that although she didn't normally diagnose on a first appointment, that she felt my DD possibly was somewhere on the AS. DD really was at her finest during the appointment, asking 'why?' constantly, trying to negotiate any 'no's' that she was told, going from one activity to another, not concentrating, not answering any question, lolling all over the place, saying she felt ill constantly pushing chairs over etc I showed her a video school had taken which demonstrated her lack of communication and ability to socialise. So, the norm for her over a day, but in one room, all of it crammed into an hour. Paed said she would send one of her nurses into school in order to observe DD as someone who doesn't know DD to give a more balanced view. Paed also said that at the next appointment that she would be looking into dyspraxia more s the physio report hadn't considered any co-ordination issues.

Spoke to my DD's teacher after the appointment and she was VERY shocked, as were TA's, that the paed has suggested this. Both nursery teacher and paed have the upmost, mutual respect for each other, as they are often in contact over other children. Teacher said that she didn't think this was the case, TA's agreed. However, they agreed that a diagnosis of something would be good in order to ensure continued help for DD into reception. I'm stunned. I thought that school would agree and i'm now worried that now it seems we are finally getting somewhere that school are going to throw a bit of a spanner into the works... They do not think that DD is on the AS although they say that they recognise that she MAY have some minor traits.

Some of DD's behaviours are:

Lack of social interaction with other children in her peer group - apart from her two older siblings.
Doesn't like having her teeth or hair brushed, she often cries.
Obsessed over illness, bad throat, tummy, head every day. Watches Get well soon on Cbeebies obsessively.
Likes one certain food - pasta, and asks for it all day.
Often refuses to walk anywhere, unfortunately if I don't have her buggy it means that I have to drag her which although I hate doing I have to as she weighs four stones in weight and is the same height as a 6/7 year old.
She will lie down on the floor or loll around on furniture. If we're out in public she often refuses to move.
Cries a lot.
Runs away from me, I scream after her but she will not stop. Sometimes she runs into the road - she has no sense of the danger of a lot of things, although not all.
Doesn't play with anything for very long. Her concentration is very poor.
Struggles to follow instructions - she normally has to be asked and prompted several times.
Holds her self from going to the toilet. Generally will only wee around twice a day. When out for the day I have to force her to go, which is often accompanied by screaming and crying.
She will argue with me - today at paeds appointment, she wanted to go up on the high examination bed but I said no and she asked consistently within the time we were there and kept asking why?
Gives the funniest facial expressions and eye movements.
Life is generally a struggle. I cannot take DD out on my own often as I end up getting upset when she won't move/runs away/won't play.

However, for all of this she is the most loving little girl. She has a good relationship with her family and communicates this well. She gets on well with adults, but due to her funny and comical little ways they often just laugh with her instead of trying to direct her towards the correct way in which to do things.

Paed said she only diagnoses if she feels that it will help a child at school and in life etc. School agreed today that my DD will struggle in reception without some level of 1-2-1.

I'm not quite sure where we are heading now to be honest and would just really value some advice on the whole situation.

imip Tue 02-May-17 17:37:58

Teachers and TAs just are not qualified to say that it's not ASD, a pead would be a much better person to trust. I would go ahead with the diagnostic process without delay. Some of your points above would be of concern to me. You could do a little reading around females and autism (google Tania Marshall and Tony Attwood).

It took me a very long time to get my dd diagnosis as girls can be a lot harder. Do some reading and see if it fits 'more', but don't rely on the advice of teachers in this respect.

imip Tue 02-May-17 17:39:16

Bit shit about the pead saying that they wouldn't necessarily diagnose. ASD is not static and can cause problems at different times in life. Make sure they fiagnose properly via Ados.

outputgap Tue 02-May-17 18:03:10

I'm presuming you are in the UK, newnamechange. It's not up to school what diagnosis, if any, your child gets. Totally echo imap, that you should follow up the diagnostic route.

newnamechange84 Tue 02-May-17 18:27:21

Thanks! Will definitely look into those books - sounds like they would be helpful. Yes we're in the UK. I think our paed can just diagnose without ados as that's how it works round here with preschoolers - we're in Wales. Im just worried that school will have some influence. No one sees my DD at home, I know something isn't 'right'.

imip Tue 02-May-17 18:40:53

Hmmm, I'd really want a proper diagnosis. You can't really help your dd if you don't know the true nature of her challenges. Fwiw, when I went to see the community pead (at school, because they wouldn't accept her on the ASD pathway) I was told dd didn't have autism, she was just jealous of her siblings hmm.

I'd google the NICE guidelines for diagnosing autism and mention this to your pead. Don't accept a diagnosis that has not been properly done.

imip Tue 02-May-17 18:41:57

In my area, they try not to diagnose before primary school. Just remembered that. They send you back home for 6 months and take a wait-and-see approach.

newnamechange84 Tue 31-Oct-17 12:42:42

Just checking back into my thread. DD now has a diagnosis of ASD. Paed discussed with me that we didn’t need to do ADOS as she was so sure and also one of her nurses has also been into school and reported back exactly the same. We discussed how girls present much differently and this is hard for some people to see.

I have so much to come up against now though. EP reported NOTHING wrong at all with DD and paed commented on how different this was to her and her nurses opinions. School definitely don’t think it’s ASD either! I feel worried now - DD went to a disco Friday night and loved it, she does swimming lessons on a Tuesday and is getting on well. I suppose I’m doubting myself. Paed wouldn’t diagnose if they didn’t think otherwise would they? I have friends that don’t agree and can’t see it, just think she’s quirky and a bit wicked. I’m going to come up against them now too.

Diagnosis was meant to be an end to the battle and a start to recognition for my DD. It doesn’t feel like it now.

Waitingforsleep Tue 31-Oct-17 15:06:47

Sorry to read quickly and run but what about ADHD? Sensory processing? These two things jumped out at me. Could be alongside or instead of asd?

newnamechange84 Tue 31-Oct-17 15:50:02

I THINK both of those are classed as being under the spectrum now, however I’m not 100% sure! SPD would make sense though - paed said it was spectrum as she doesn’t quite fit anything specifically.

zzzzz Wed 01-Nov-17 08:17:10

Why does it have to be a battle? It’s just another bit of information about her. If she’s in a good spot and happy and her needs are met, then she will thrive. If that changes you have the dx to help you access support for her. Remember some of the most successful people in the world are autistic, it’s not a given that she won’t fly through with a loving proactive Mum and a school that is hitting the spot.

newnamechange84 Wed 01-Nov-17 09:38:52

Ok so I suppose I’m anticipating that school and EP will try and oppose the dx. Not sure if they can do that. Only last week the teacher said she didn’t want DD ‘labelled and diagnosed’. Why, I don’t know. From previous experience with our LEA everything is a battle and you constantly having to fight for help and prove stuff. She will fly now we’ve got some answers - I’ll make sure of it.

zzzzz Wed 01-Nov-17 12:52:17

Only last week the teacher said she didn’t want DD ‘labelled and diagnosed’

Well if she chooses to treat her children’s difficulties as something to be ashamed of, no one can stop her, but she isn’t the parent, or the Dr. angry

What a disgusting disablist attitude.

newnamechange84 Wed 01-Nov-17 13:04:49

I did wonder what was wrong with being diagnosed and labelled tbh. Surely acknowledgement of a condition is more effective than just saying a child is badly behaved and having nothing to pin it on?

Waitingforsleep Wed 01-Nov-17 20:05:16

I have no idea also why the label thing is so hard to understand. It's just signposting and help for something and shouldn't have such debate surely. Best of luck smile

newnamechange84 Wed 01-Nov-17 21:03:11

Thanks waiting for sleep 😊Very true - it now means we can access the local support group which we couldn’t before. Not hard to understand you’d think!

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