Hand flapping & other things. Explanation needed, please....

[lou031205]

I'd really like some help with two things, please

1.The consultant always asks if DD 'handflaps' and we have always said no. However after the last consultation (and co-inciding with starting Epilim, oddly) in early January, she has started flapping her hands when she is upset. Today she has been flapping them in my face, hurting me.

Is hand flapping always concerning, or is it normal in a child who is upset? What is concerning about it? Why does he ask?

1. After her latest meltdown, I asked DD if we should have hug to make it all better. She said yes. Then she spontaneously put her head on my lap and said "Sorry Mummy". I was so chuffed that I said "Miliie! You said sorry! That made Mummy so happy" and gave her another hug. Then DD repeated the sequence (putting head on lap and sorry) three times in a row.

Why? Did she think thst she liked the hug so did the same thing again? Why didn't she just hug me? I'm confused.

1. can be an ASD symptom. think it's one of those things like eye contact - that it's not of any huge significance as an isolated symptom.

1. I guess maybe she took it a little literally - that if saying sorry meant you were pleased and hugged her, then saying sorry more times would make you evven more pleased?

DS1 hand flaps when he is excited. He is DX with ASD and I think this is a sensory thing, its like he is so excited he can't contain it and goes into bouncy tigger mode. I've never noticed him handflapping when he's upset he tends to freeze on the spot (or lay down and have a complete meltdown!). He only started doing it when his speech took a massive leap forward (and started toe walking for some reason).

2. maybe your DD really enjoyed your reaction to what she did so she just wanted to do it again? DS1 really goes in for repeating skits for reaction but I don't know whether that is just an age thing (he's 3.4). His play on the whole is very repetitive so if I invent a little game with his toys the next time we play he demands I say the say things, hold the toys a certain way etc etc and that is more of an ASD thing.

Dd2 hand flaps, she has ASD but she doesn't flap as much as she did 6 months ago. She's now started spinning instead .

Thank you all. I am wondering more and more if DD does have ASD. The consultant (whose special interest is in neurodisability and autism) has said that sometimes you have to consider ASD with children with developmental delays, but as DD 'does some nice things' he is steering away from it. What he is talking about is that she likes to engage with adults on a one-to-one level, so will make eye contact and initiate.

But I am concerned because:
-She needs 1:1 at preschool because she doesn't cope with structure, can't cope with group activities, etc.
-She has no fear/sense of danger
-She is sensitive to noises
-She gets fixated with things (i.e. meltdown because she saw a carrot on next door's lawn, and wanted it. HAD to have it & couldn't)
-She totally focuses on minute aspects of activities (ie. she didn't show any interest in 'sound bingo' at preschool, but LOVED the tiddlywink counters and got so hysterical when they were put away that she was still crying when I came to collect her).
-She has SAL delays
-She gets hyperstimulated by activities like dressing
-She takes things literally and doesn't understand context.
-She has started handflapping when upset.

But then I know that a lot of conditions overlap with each other.

I suppose it is simply that when I hear you all talking about your children with ASD, I can see DD.

Thank you TPHWICB for that explanation. It is always, I have noticed, when she is very upset because we have said 'no' to something she really wants, or something unavoidable but distressing for her happens. It can be as simple as one of the programs on CBeebies ending. She literally flaps her hands like she is doing doggy paddle in the water as she cries.

In the last couple of weeks she has started hitting me in the same way, but it always starts with hand flapping. It is very clearly emotional overload I think, because she seems very distressed after she's hit me, and confused also.

I wonder why your consultant is steering away from ASD when you have given a pretty comprehensive description in your DD. As it's a spectrum disorder each person will present slightly ( or more than slightly ) differently. Having AS doesn't make someone less of an individual either so their personality will still affect behaviour too, just like anyone else.

My son with AS has always engaged on a one- to-one level, makes eye contact and will initiate ( not always tactfully but...hey) a conversation.Like HedgeWitch, I often think the handflapping is partly a way of dealing with anxiety, an ever-present companion in AS.

I guess the hugging thing is related to ' theory of mind' where she can't see a situation from anyone else's point of view but her own but saw that you were pleased, so repeated it to please you. It probably pleased her too.Take that as a positive

ds2 handflaps when excited aswell, also sometimes clicks his finger whilst hand flapping. he has also been known to headbutt things when really excited- usually christmas or birthdays- he doesnt have an asd dx but i am thinking he will get one soon

Alfie hand flaps more when excited, when he is frightened, he shakes and bangs his head and covers his ears.

When Alfie flaps his hands he also jumps, or if sat down rocks back and forth.

When I was unsure of my ds, I looked on you tube to see if others did what he did, it kind of put my mind at rest as it looked the exact same, as other stimmers.

My DS has CP with fine motor delay and speech delay (he's 30mo) and has started hand-flapping when distressed. I'd go with the sensory stim, or that he's so frustrated he fidgets.

Just seen that there are more replies - it is all so useful.

I must admit that I am confused by the consultant too. He is fab, but both times we have seen him he says something along the lines of "sometimes we have to consider ASD, but as DD does some pleasing things I am steering away..."

The thing is, I suppose, he can only see what he sees. He sees her in a situation where she is in a safe room, with 3 adults all giving her attention, and toys to hand. And he has bubbles (one of her favourite things). So, he sees a child who is a little hyper (turning the taps on every minute or two), but is content to do what she wants.

If he saw her at her SALT assessment, he would have seen what she saw: Fleeting attention, needed adult supervision to ensure her safety (ie. climbing, hitting her head...), lots of encouragement to complete assessment with breaks between each section...

If he had seen her at preschool today, he would have seen her screaming, running away, shouting, kicking and hysterical because I had brought the car to preschool and she wanted to walk.

Yesterday she came home from preschool, led on her back with her legs in the air and was cycling them furiously, shouting "Row row boat, gently stream, merrily merrily..Row row boat, gently stream, merrily merrily..." over and over again, swishing her head from side to side.

The thing is, when we first saw him, I had no idea about ASD (thanks for the education MN ) really, and was just going on stereotypes and my knowledge of the two children I have known with it. So I confidently said to him "I don't think she could be on the AS, because she is too interactive..." I wonder if he thinks that she IS on the spectrum, but doesn't want to say yet because he thinks we aren't ready to accept it.

I JUST WANT ANSWERS. I just want to know, and if she has ASD, I can get her the help to be the best she can be. I am petrified that she is just going to sink next September, because the LEA will try and fob her off with School Action, or School Action + and she will be left to get herself in danger and flounder.

Sorry RANT RANT RANT... get over yourself, lou.

Has the SALT done a report following the assessment and will a copy go to the Paed? I think a joined up approach works better for assessing for ASD in children where it seems "borderline" for want of a better word. When DS1 was diagnosed with ASD it was done at a multi-disciplinary assessment where the SALT and OT did the ADOS test on him (all play based) and the Paed asked for the parents perspective plus the usual history. The preschool had also written a short report to take into account on the social side. If you feel you would like to explore having your DD assessed for ASD it may be worth asking if your area does something similar.

Whilst getting an ASD dx did answer the is he/isn't he it has raised more questions like what exactly do I do about the fact his language is a mish-mash of learnt phrases and who is going to help me with other issues etc

Hi notfromaroundhere

The SALT has done a report, and a copy will go to the Paed. In it (it is very brief) she says that DD has

-Fleeting attention,
-needed adult supervision to ensure her safety (she was constantly climbing, hitting her head...),
-lots of encouragement to complete assessment with breaks between each section...
-Reynell assessment with comprehension on the 13th centile (that is inaccurate, as she showed me the centile charts, and pointed out the 12th centile, and that was based on a child of 3.0, but I won't quibble)
-Expression broadly in line with comprehension
-Attention span will affect DDs ability to understand everyday situations.

We see the Paed on 18th Feb, so hopefully he will have received it by then. In any case I will take a copy.

I know that a dx is just the beginning, but I suppose I feel like I can't even begin, because we don't have anything to go on.

That's good that you've got it but I know these things aren't what you would call an uplifting read but accept they have to focus on the difficulties rather than the positives. Has the the preschool/nursery done a brief report of how your DD interacts there with her peers etc? Might be worth asking if they would put something down on paper so you can show the Paed.

I remember the is he/isn't he feeling well and it was really difficult doing the waiting and seeing approach.

Good luck with it and I hope the appt goes well for you.

Yes, the preschool were the ones who started the ball rolling. They got the area inclusion officer in, and she recommended 1:1 and secured funding from children's services. DD was then referred to the educational advisory panel, which our Consultant sits on.

Meanwhile, DD started to fall for no reason, so ended up in hospital. The admitting Consultant referred her on (whilst an inpatient) to our Consultant, who happened to have a clinic on the day she had stayed in hospital, so he saw us that day.

So from that perspective it couldn't have been a better outcome, because it would be our Consultant that eventually saw us anyway, but probably several months down the line.

Thank you so much for your replies, it really helps to 'speak' with people that have been there.

What does your consultant specialise in, apart from children? Does he specialise in developmental disorders, particularly autistic spectrum disorders, and does he spend most of his clinical time dealing with this? If he doesn't ( I'd ask him) then you might benefit from seeing someone else.
Making a diagnosis based on what he sees in his consulting room seems a little odd- it's not chickenpox - but if you think you're both dancing round the subject why not say that?

Sorry if that sounds a bit blunt but I learned the hard way that some consultants are way better than others. You are concerned only about your child and getting what's right for her so you have to be assertive if you think you're getting nowhere. Good luck, anyway .

His title is Consultant Paediatrician with special interest in Neurodisability and Autism. I take it that this means he is a developmental paed?

He seems very good, but we have only seen him twice so far. Perhaps I am expecting too much too soon.

He says that he prefers to see children some months apart, but for longer at a time, so that he can assess change. Having said that, we saw him in October (1.5 hours), then January (1 hour) when he prescribed her Epilim, and he will see her again on Wednesday to see how things are going.

He seems very thorough. For example, he wanted to talk to us about her epilepsy dx, but when we told him about her sleep he documented all of our issues, and his suggestions, in his notes. We always get a very comprehensive letter following a consult also, detailing the issues presenting, and what has been discussed, with future plans.

Forgot to say thank you

I hope the Paed appointment goes well today

good luck with paed appointment today

Thank you both! I've got to go and wake little lady in a few minutes...

hi, have just been reading this post.how did you get on today? from what you describe, your daughter would fit ASD spectrum. hand-flapping is often seen in children with Autism-classic and Aspergers Syndrome. we have two sons with ASD-one handflaps(and almost does windmills when exicited), while the other one spins-certainly makes life interesting.it is known, that many children with Epilepsy also have autism, and vice-versa.(by the way,handflapping is not a diagnostic criteria for ASD-just cos your daughter doesnt, doesnt mean she does not meet ASD spectrum).Agree with previous posts, that the paed. should not make dx, on what he sees only in his consulting room. ASD children can present differently in different situations, and if the paed. has bubbles and other things your daughter enjoys,shell present as calmer and more compliant.(i think you mentioned running water-many ASD children also like running water, the sound and feel-one of my sons turns the taps on as hard as he can-mind you, he also has ADHD.)the paed. should be getting info. from everyone involved with your daughter and yourselves.He could also carry out an ADOS assessment to know if your daughter has ASD or not.Some autistic children have difficulty making sense of the spoken word, and also putting these together with actions. Perhaps your daughter made a connection between sorry, and hug-an autistic trait also, is to repeat back words. i think also, you should ask the paed.directly what dx he has in mind for your daughter. Some professionals do not like to label children, but dont understand what a difference a dx makes to a parent and also what a difference it can make in terms of the help a child can get from other services.some autistic children DO make eye contact,but look away, others stare too intently and some ASD children engage very well with adults, esp. in a one to one situation,esp. typical of children with Aspergers.Ask the paed. what he means by saying things like... but she does nice things. Is he old-school? Autistic children do nice things(sometimes in an odd way), and having Autism is not all doom and gloom. Hope you got on alright today, and you are a bit further forward. Good Luck.

my ds is undergoing a diagnosis it is v. fustrating, agree with every thing you say big pants. my ds has good eye contact, interacts well with adults, and has a no. of interests (well for a three year old), but the assessments have been going on over a year, but we all know what the outcome will be, i just wish they say it and let me get on with things - then my oh might believe me and accept it. dx would make a difference, as would mean as a family we could move forward, and we would have access to help.

Im not sure if this would help at all, but I have some footage of my ds handflapping, he has asd. May be good to compare (wouldnt normally do this, as wouldnt like all and sundry to see if, ifykwim)