Maybe ASD, maybe ADHD, maybe nothing, maybe something Aaargh!!!!!

[geeandfeesmum]

Ok, this is my first time posting on here so please bear with me. DD has always been different. DH and I have always said that she's not normal ( oh god that sounds awful). Her behaviour has always been wild. She jumps and climbs and throws things. She doesn't really sleep. Maybe slept 2 nights in her own bed all night. She does weird things like eating soap and putting things on her head or in her hair. From when she was born, she has always been extremely clingy to me. She cried for the first eleven months constantly unless I was holding her, day and night. Of course that was fun for the relatives that looked after her when I went back to work. After she stopped having milk she seemed to cry less. She never really liked it anyway and was often sick after it. She is still clingy though and follows me everywhere I go. She can cope at the relatives houses that she is at regularly during the day and she is at preschool as well. I don't take her to the preschool so that might help her with that.

We took her to A & E when she appeared to have a reaction to the antibiotics she was taking. I'm still not entirely sure that it wasn't a tantrum although what it was about I still don't know. The doctor we saw obviously had concerns as he asked a lot of questions about her behaviour and her speech etc. Whilst we were the tantrums finished and she was going crazy trying to run up the halls of the ward, we wouldn't let her so she had another tantrum and was throwing herself on to the furniture etc. The doctor reffered us to the paediatrician. The paediatrician mentioned ADHD on the first visit but she wouldnt be willing diagnose that as she is so young (3.2 at the time, 3.8 now). She also prescribed Melatonin for her sleep issues, but I've been reluctant to use it as yet. On the follow up visit she mentioned ASD and gave me some websites to check out. She also said she would like to arrange a multi agency meeting to discuss it but I'm not sure what that means.

I mentioned the comment about ASD to her Early Years teacher and she said it has crossed her mind as well. She wants to arrange Statutory Assessment and hopes that the EP will suggest it after preschool visit but I haven't heard anything from her at all. Her preschool are concerned about her and feel she will need extra support in school. At her parents evening they basically begged me not to send her to special school. I hadn't even thought of it as an option. They also suggested deferring her from school for a year. She will be a very young 4 when she starts school in September. But then her preschool teacher seems keen to downplay her issues as well as they "don't want her to be labelled". I just want her to get the help she needs.

I feel kind of odd about the whole thing as well. ADHD has been on my mind since day 1ish. But, ASD, well that?s something new to me. I have read up on it and I'm still a little unclear as to where she fits in.

She has no issues at all with eye contact, certainly not with myself or people she knows. I'm not sure where she stands with that with people she doesn't know.

Her imaginative play is very good indeed. She plays with dolls all the time, almost exclusively, she occasionally uses toothbrushes as doll substitutes (I can't tell you how many times we have had to by new toothbrushes. It is at least once a week lol).

She loves to dress up. She pretends to drink from a toy cup after pouring pretend tea. The other day, she lapped up her drink as if from a bowl on the floor and then she came over and said "woo Woo" which is Woof Woof.

She still doesn't really play with other children. She prefers to do her own thing and will usually push other kids away if they try to join in. She has played alongside one child in the same area at preschool, but the child is apparently extremely patient with DD and if DD wants something she has, she gives it to her and if DD wants her to go away she does.

She still kicks, bites, punches people. She also kisses random strangers.

She has regular tantrums if things don?t go the way she wants. She still doesn?t seem to be able to sit still for long although, she did recently let me read a short book to her when I added interactive bits into it.

She can match colours and can point as if to count but doesn?t say the colours or numbers.

She is still very clingy towards me and it took a while to get her settled at preschool. Once she had attached herself to a certain teacher she got better with it. I don?t take her to preschool, my family do, so I?m not sure if she would be ok with me leaving her. Once we get to preschool to pick her up she just attaches herself to me the whole time.

She still has sleep issues. She will sometimes fall asleep at around 8ish though which is an improvement. Even now, she still wakes up and gets into our bed. I have tried the usual sleep tactics. A few nights ago, I attempted to keep putting her back in her own bed each time. I lost count after 150. She thought it was a game. It went on from 11pm-1:30am. I eventually fell aseep in her room and she did too. At 4:15 she came into our room. I would have tried the same again but we had to be up at 6am so by the time she would have gone to sleep we would have been up.

She is still not potty trained. I have tried leaving her with nothing on, but she just holds it all day and then if she falls asleep, either at night or for a nap I will put a nappy (diaper) on her and she will do her business. She is quite happy to sit on the potty or the toilet but nothing ever happens. I don?t think she really gets the point although I have tried to explain it to her she doesn?t understand.

Anyway, I still don?t really know where we are. Clearly, she has issues. Clearly, she will need help at school. We are not currently sure why or what is the issue. We are not currently sure of the best course of action.

I?ve been reading up so much about ASD lately that I feel like I?m going crazy. On the one hand, it really does sound like DD. On the other hand, it sounds nothing like her. DD has always had great eye contact. She has always been fine with imaginative play. Although, she didn?t used to hug anyone but me, unless she instigated it. She now accepts hugs and kisses from others. She will bring toys to people. I have known her to point at things although it is rare. Her speech is improving as well. But then, there is something that is just not quite right about her. She does do weird things like putting stuff on her head, going cross eyed all the time, having meltdowns, really struggling with being separated from me. Her speech is still markedly behind. And there is just no way she will cope with school. Having said that, I?m shocked with how she copes with preschool but then again they work with her a lot. And they give her a lot of leeway on things. Her preschool teacher said that the other children are very patient with DD and that helps.

That just won?t happen at school. I almost wish they hadn?t mentioned ASD at all, then I wouldn?t be sort of pinning my ?hopes? on that, if it isn?t that at all. Is it that? Is it something else? Is it nothing? I really need to know soon otherwise I?m just gonna crack up!!

I don?t even really know how I feel about it all. I think on the one hand if she was diagnosed with ASD and/or ADHD it would be awful because of the obvious reasons but then I think I would feel relieved that it?s not just that I am a hopeless parent with no clue how to teach a child the basics and no clue how to discipline bad behaviour.

I guess I just wanted to talk it through with people who are not involved but may know from their own experiences some of the issues we are facing. Sorry this is so long and disjointed I am just getting it all out of my head.

Sorry, meant to say her speech is very delayed. We have been told it is about the level of an 18 months old. When she wants me to do or get something, she takes my hand to either take me to it or show me what she wants.

Hello geeandfeesmum

Wow! That must have helped getting all that out.:)

Firstly your dd sounds very much like mine. You sound like your head is going to explode with the confusion.

When your first told that there might be a problem with your child it's almost like an out of body experience. Even though, as you say you had your suspicions for a while, it still knocks you for six when someone says "yes, I agree. Something's not quite right.

Personally, I would stop googling. At least for a while. It really will drive you insane, but more importantly you are not going to get her diagnosed with anything through trawling the internet. It can be terrifying! I'm not saying that I still don't do this sometimes, so I accept that i'm being rather hypercritical.

Your dd clearly does have some issues and if she is that far behind, then keeping her back a year is probably a good idea. How is she with colouring and holding a pen? Does she have a palm grasp. My dd (4.5) has only recently stopped having a palm grasp. Does she have any friends? Does she want any?

I'm sorry you're feeling like this. I still have really bad days, but once you've truely accepted things, I promise it gets easier. :)

She doesn't have friends. She has palm grasp. You are right I am just driving myself crazy going around in circles. I think I just want to get it all out lol!! Thank you for the reply I really appreciate it.

I guess my main thing is that I want to know if I'm barking up the wrong tree. I know that the professionals know what they are talking about but there is from what I've seen here anyway, a big difference between mentioning ASD and having concerns and getting a x for ASD and getting the support needed.

Gosh geeandfeesmum, you're going through the mill at the moment. There's obviously something up but it'll take someone more experienced than me to sort it all out. It's possible to be co-morbid ASD and ADHD. Girls are harder to place on the autistic spectrum than boys as some of the autistic deficits like empathy and social communication, girls are naturally better than boys at anyway.

A multi agency assessment will mean getting a few different specialist professionals together, like SALT, developmental paed, maybe CAMHS, so they can see the bigger picture, hopefully. Like floopy says, googling will hive you lists of symptoms, at least half of which your DD won't have. That's one of the problems with ASD, everyone presents differently. If you have a look on the NAS website at the triad of impairments that may give you more clues.

Is she due to start school this Sept? Has the school promised a deferred year? You can only get this normally if the school is undersubscribed, or if you have a statement of SEN in place before allocations are made. They can only have 30 in a class by law and can't give a place out of year if another child of the right age has already been offered it. Deferring a year sounds like a really good first plan.

Have you or your pre-school requested Statutory Assessment for a Statement yet? I think you should get on with this in parallel with a DX as it can take ages, 6 months or more. It is supposed to depend on need, not DX and your DD sounds like she will need some 1:1 if she is going to go to mainstream (MS). If pre-school hasn't, and is waiting for some reason, you can request it yourself, ask pre-school for the form and/or address.

This is nearly as long as your post! Others will also give you good advice. HTH.

Well, unfortunately the professionals don't always know what they're talking about. I've come to this conclusion purely because you could see 5 paeds and they could very well all have a different opinion.

I completely relate to what you're saying. But how can you be barking up the wrong tree? To carry the metaphor on, you don't even know which forest you're in yet. You sound like youre just getting the ball rolling so you're doing everything right. Sounds like she's at a good pre school if the other children are so patient with her.

I was very lucky with dd's school because there's a transition period between the pre school and the primary school so it's all very gradual. Could you possibly chat with the school about bringing her for separate visits so she gets used to everything. A lot of schools have visual timbetables now, which are brilliant because they really help SN children and all the other children don't notice that it's anything to do with special needs, because they're just picutres and it's for all the children not just the SN children.

How are do you feel like you're coping?

That last sentence didn't make any sense. I think you got what I meant though

Hello geeandfeesmum and welcome to SN on MN,
I'm sorry you have been having such a hard time with your DD. My DS was DX with ASD about 7 weeks ago now and we have had concerns since he was 2.5. He has delayed speech, doesn;t really interact with other children, although he does play great with his older brother, and plays alongside ither children at nursery. But he has tantrums and difficulty understanding instructions. He is very affectionate, loves kisses and cuddles and will do great eye contact-on his own terms though, not all the time. He does play with toys and will play with a tea set and pretend food-but it is all repetition of what we do, cut the food up, divide it up, pretend to eat, say yum etc, and will pretend to play on a phone and say 'hello chat chat etc', but this is not classed as imaginative play. This is not extended play where he is acting out scenes with his toys, they have imaginary voices and are going off on an adventure etc. Not all ASd children are the same, and there are 1000's of different versions of autism.
Have you got another appt with the paed? Have you had a speech therapy assessment? Is there a specialist early years service in your area? Ours have been monitoring DS and are starting the statementing process. DS will be 4 in aug, and will be a very young 4, but he will be starting mainstream school in sept. he has an older sibling who goes to that school and if I held him back for a yr he would probably not get in there, and would go straight into Yr1 where it is lots of proper work. I have met with the headteacher and SENCO at the school and DS will have an LSA to work with him for some of the week, and we have talked about him going PT initially to see how he gets on.

I have had more help from the SN boards of MN than from any professional we have encountered, so please feel free to vent here, you will get lots of help and advice.

God it sounds like you really needed to vent all that! Hope your feelig ok in yourself! Remember to look After yourself! Diagnosis is a long horrible road with lots of twits and turns, try to vent as often as you can! Don't let it build up!

We need patience during this time more than ever!

Thanks so much for all the replies so far. The school have not yet promised anything. In fact we only found out which school she will be going to this week. We are not happy as it's not a great school but that's another story. DD is also 4 in August. DS is 5 in September so just to complicate matters further they will both start full time in September.

As for DD, she has had SALT assessment back in October time. She was then put on a waitlist. She sees an Early Years Teacher once a week. It was her who said that we should suggest to the EP about statutory assessment as she (the early years teacher) would only be able to do it after half term.

You can request SA yourself, might be worth investigating if it starts ghings off more quickly. Having your DS and DD in the same year (same class?) is only going to point out differences all the more. What a shame. With an August birthday I'd really be looking to defer a year.

Often the 'best' schools aren't the best for SEN, so don't worry too much about league tables, go see the SENCo and get a feel for how they operate.

Things, not ghings! [bublush]

Thanks. The school isn't great in general not just with league tables. I have just found out that I can request SA myself. I would like to know what the EP thought first. Do you think she would say anything if I rang her?

Worth a try.

Hi geeandfeesmum and welcome to the board.

Your Dd sounds similar to my 2 except for the lack of speech[mine never stopped].

Someone said earlier that girls are difficult to Dx and they were right you will have to keep pushing.

I would recommend that you get a referral to your local CDC, they have all the professionals in one place and should be more able to help you.

Don't leave it though because once they are 5 they can't been seen there and have to go through Community Paeds or CAMHS.

I would keep a diary of her difficult/unusual behaviours and how you dealt with them, this will give whoever sees her some idea of what she is like to live with.

Good luck and don't be afraid to come here for a vent.

Agree with needalife's idea of keeping a diary ... print out your original post for starters - it pretty much covers all your conerns

First thing is first.. Hope you feel a bit better for letting that out :)

the bit before dx, the whole assessment, might be this might be that is AWFUL and it will drive you potty. Trying not to work it out yourself is nigh on impossible, so of you just take that as a given your on the right track :)

there are things you can do to stop your head going round in circles ( while your on waiting lists).. And this is a good way forward.

Keep a diary, night and day time ones. Just log any odd behaviours and bad nights.. Also log anything you've tried to use to help and if it works or not.

Get a lever arch file and polly pockets, to keep all letters, and any paperwork together.

Get a note book and have this as your contact log. Write down anything that had been promised to you, who you've spoken to, dates, phone numbers ( particularly direct lines).
It will save you going totally barmy when you need to chase things up.
( remember to take notes in meetings and from phone calls.. And who said what).

Write a list of issues you face, and things you've already tried to help.. And write down any successes!

And you will need a supply of chocolate, tea and wine!

Give the melatonin a go, sleep deprived mummy and child are a bad combination.. You'll cope better if your both sleeping.

Communication problems are a big part of yuk behaviour IME.. ( whatever the cause), so are any sensory issues ( I'm thinking about the bouncing about and soap eating here).. Give her time to process what she has heard and how she wants to reply, ( replying is anything from verbal to pointing etc).

Jump off google and go to amazon ( or your library)

have a look at

the out of sync child

books by tony attwood about girls

(. Others on herecan give you a wider Reading list).

Also you may like to try out a 'wobble cushion' ( it helps with the sitting still thing)
a gymball
small space hopper
trampoline
games where you move about ( twister, simon says, mirrorig what you do)

you could try a weighted lap pad

remember short clear instruction and time to process
and lots of praise or rewards for good things

hope that helps

Thanks so much. Great advice from all of you. I'm currently feeling okay about things other than going round in circles in my head. It all sounds a little odd because I have been writing a diary and most of it has been taken from there.

I guess I just want a crystal ball to tell me the future you know. Sorry it came across as though I am having a bad day, just a few months of writing mixed together to make one point.

Is it even possible to have ASD with good eye contact and what I think is good imaginative play?

The thing with ASD and ADHD and many other similar Dx's is that there are so many crossovers.

Some children could be Dxed with several things at once some are quite clearly one thing.

Dd1 was nearly Dx'ed ADHD when she was 9 but she didn't meet enough of the criteria, however I think if she was 9 now she would probably be dx'ed AS, which is what we have been thinking for Dd3, however she is now showing many signs of Dyspraxia so maybe she will get Dx'ed with that.

Who knows, try not too think too much about where she fits because she might span several things. Just look at what she is good at and what she is behind with for now and keep notes so you don't forget when you go for appointments.

Good luck .

Thanks I appreciate the reply. The thing is, I'm a doer but unless I know what I'm dealing with, there's not much I can do. I'm just feeling a bit uselss at the moment. I have been working with her and she now counts up to 2 (1,2,1,2,1,2), which is an improvement. But then 2 minutes later she is spinning around and around on the floor just like grandpa on the Simpsons movie. She will come and give me a kiss and then slap me in the face. I know theres not really much I can gain from being on here yet. I'm not looking for an online diagnosis. So guess that until I get the proper diagnosis theres not really much advice you can give, although The advice you given to me so far has been really helpful. I have been writing a diary of her behaviours and also what she eats to see if it anything to do with diet. I'm really just wondering what I can do to help her and is there anyone I should be in contact with at this stage. Is there anything I should be sorting out. The school thing is a problem. I don't know whether holding her back a year would help or hinder her, but then who would know. I don't like the school she has been allocated and wish I'd heard about another school in the area that deals with speech and language issues, they also deal with ASD but I don't feel comfortable mentioning that if she hasn't got it. I just can't see her being able to cope with sitting in a classroom or getting a tray and sitting down for lunch. At break times she will likely be fine, she will just play on her own. Other children at preschool try to play with her but she doesn't really seem to notice unless they get right in there and then she pushes them away.

I just want to know so that I can get started doing the right things. Are there any right things I can do now without knowing what this is?

It's good advice generally, to treat your DD as if she has ASD because it won't do any harm if she doesn't have it, but will give you a headscarf if she has.

If her communication is poor and causing frustration the Hanen book, "More than Words" from Winslow is a great start. It goes through sensory issues (she does sound quite hypo-sensitive) and communication stages and how to deal with them. If words aren't working (too abstract perhaps) try pictures or symbols to give your DD some choices and, hence, some control back in her life.

Otherwise just keep your language really simple, cut out unnecessary words, and give lots of time for processing. Give your DD the words in the question to help her answer. Eg "Do you want orange juice or milk?" rather than, "What do you want to drink?" Use first, then, in the order in which things will happen. Eg "DD, first coat, then park." Not "We'll go to the park in a minute after you get your coat on, DD, what do you think? Does that sound nice?"

Bloody predictive text! Headstart not headscarf!!!

And yes, you can have ASD with good eye contact. Girls are generally better at imaginative play, but it's the quality of the play they'll be looking for. Is she acting out a very similar scene each time, or can you change it and extend it?

Thank you it's good advice about speech etc. Unfortunately her speech isn't quite at the level where I could ask her which drink she would like. So far I have got "Bider" (spider), "bubbwhy" (butterfly), "no", "giveitback" "memeyouhand" (give me your hand), always shouted. She has occasionally said "momma" and "baby" but they seem to come and go. Also, she is getting quite good at animal noises, but then I could have said that a year ago, that also seem to come and go.

Lol, I was wondering why I needed a headscarf!!