Any experience of daughters with adhd and/or asd

[TC Devon]

My daughter is 5 1/2 and we are waiting for a date to come through for an asd assessment with the specialist. We ve been seeing a different paed consultant and after a few appointments and monitoring she's put my dd forward for asd assessment. The letters come brought saying she's on the waiting list but it's a lengthy wait.
I'm wondering how to prepare her for this and what I can take with me to support my concerns. Or do i not prepare too much so they see her in action.

Finally those of you that have daughters on the spectrum what made you think they were a bit different and what are your top tips on helping your daughters.

My dd struggles with fiction v reality.
Food smells really upset her- pizza is the worst. She gags.
Incredibly limited diet. Certain textures make her vomit.
She hangs upside down all the time.
Stimming- I guess it's stimming. head bangs and spins in circles on her knees. She's likes the head rush.
Only wears a few clothes. Jeans are a huge no no. Wrinkly socks, hair clips, waist bands. So many clothes annoy her. They cause huge melt downs.
Says inappropriate things, does inappropriate things.
Sleep issues- bedtime routines are a pain and very lengthy. She wakes in the night. Can't self settle.
Never ever sits still (unless on iPad) bumps into things so covered in bruises.
Obsesses over things- currently trolls sound track. We listen to it all the time. She won't respond to us until the song she's watching and singing to has finished. True colours is on all the time.
Likes to make this weird yodelling type noise (ollllie ollllie oh uh)which drives me potty.
Fake cries and throws herself on the floor pretending to fall over. She's very dramatic and craves attention, reassurance.
Hates getting things wrong. 9/10 on a spelling test was the end of her little world. When listening g to her read I can't tell her if a word is wrong or even help her.
Does nt like having a supply teacher.

Im sure there's more.

She makes eye contact. Speech and language is excellent. She's loving but in a very different way to her brother. It's hard to explain but it's different.
Enjoys school and is now settled but never ever talks about it.

Finally can you recommend any reading I can do to help us help her. Right now I'm guessing!
Thanks

[Bootrip2]

I know its hard waiting, but maybe start a diary type log of triggers to her behaviours etc. DD is waiting too for a formal assessment, she certainly displays alot of similar signs, but for DD it is charactertistic of a genetic condition she has, like an "added extra" to contend with, but displays similarities with ASD. I also has two boys with ASD, both very different in nature, but its a spectrum of disorders. Tbh alot of the time we go with what keeps DD feeling safe, psychologist told us before to "pick our battles" with DD to what keeps her safe and secure. I can empathise with bedtime, DD routine takes ages o t her ready for bed calmly! DD also watches the same things over and over, and also hates getting stuff wrong too. Have you seen the SENCO at school to discuss your concerns?

[TC Devon]

I'm keeping notes on my phone of triggers and incidents.
B rules our house. What we do, where we go and what we eat. Everything. I'm feeling so swamped and at a loss as to how to help her and gave a better home life for us all.
Another thing is she tells awful lies. Real shockers.
She wanders off in shops and has no sense of danger. She's like a toddler.


Bedtime is hard- we have to lay with her (a certain way) for six minutes plus a cuddle minute which is nt a cuddle minute as we can't touch her. Six minutes is never six minutes. She prefers Dh to do bedtime but he works funny shifts, she hates me doing bedtime. No idea why. She wakes every night and every night I have to sleep in her bed to settle her. Thankfully she now has a double bed.
How long have you been waiting for your dd assessment?
Thanks for your reply x

[princess-momo]

we're in a funny situation; our son hasn't officially been diagnosed because they feel we are able to manage him and control his 'episodes' and apparently our work with him since such a little age has shaped him in such a way he's getting on great. she agrees he's on the spectrum but, she does not want to label him with ASD as it's something that is with him for life; she basically said if we can manage it then no need for diagnoses. anyway! what we're worried about on our trip is that our son is not good with confined space. he needs to move ALL the time! he has to move some way or another otherwise he gets very distressed. He takes everything literally so it's going to be fun and games trying to explain to him the plane doesn't actually leave as soon as we climb aboard. he still as toilet accidents as he zones out doing certain activities. His eye contact can be really poor at times and he does this weird eye thing where he looks up and out the corner of his eyes (sometimes accompanied with spinning around) it's tough. some days i am at the end of my tether with him with his melt downs and his literal thinking but i understand it's not his fault. Routine is key in our house. if that fell away then i don't think i'd have any hair left!

i found giving choices, having a set routine with alternatives and just taking one task at a time helps us get through the day.

[WillSa6]

My youngest DD is 12 and was diagnosed with ASD 2 months before her 4th birthday which was 1 month before she was going to Florida for the first time. She was diagnosed with dyslexia when she was 8 and then there was a further diagnosis of ADHD when she was 10.

We suspected something was different about her when she was 2. Our older DD (now 17) was talking in full sentences at that age, was able to concentrate and play with something for ages. H had no attention span, she would literally play with something for a couple of minutes and then move onto another toy, there were times that we couldn't understand what she was trying to say which made her frustrated and caused meltdowns. When she turned 3 I remember taking her to the park one Sunday and it was freezing. I let her go on the swings etc for about half an hour and by that time it had just got so cold I literally couldn't stand about any longer, so I said that it was time to go home. She had a huge meltdown and started kicking and hitting me, shouting and screaming in the middle of the park. I literally had to grab her and drag her out of the park as I was mortified with the way she was getting on and other parents standing and staring at me.

My SIL is a speech and language therapist and we happened to be talking one day and I mentioned about the ' tantrums', the speech problems and also the attention problems. She went into her work (which was a specialist NHS children's therapy centre) and did a referral for H to be seen by another SLT, an OT, a physio and a paediatrician. We were asked question after question after question by the 4 of them and at the end of the session they told us that they wanted H to attend a clinic 2 mornings a week for six weeks with another girl of similar age to her so they could get a better idea of her problems/difficulties. To cut a long story short at the end of the 6 week period we had to go and see the SLT and OT to discuss the outcome. We had never considered autism, I had thought maybe ADHD and to be honest I thought of autistic people as being like Dustin Hoffman in Rainman, so it came as a huge shock to both of us when we were told that they suspected that H had ASD but it would be confirmed once the clinical physcologist and the consultant paediatrician had reviewed the session tapes. That was a very long 3 month wait to see the consultant.

Fast forward A few years, H has always attended mainstream nursery, primary and now secondary school. She has always had concentration issues in school, not listening to the teacher, focusing on a bird in the playground outside or a speck of dust on the light instead of doing her schoolwork but due to the education and health resources being so strained it took until she was 9 to get a classroom assistant 3 hours a day.

Once the ADHD was diagnosed, the doctor put her on medication and it seems to have helped greatly with her concentration. She moved to secondary school in September and loves it. She gets the school bus to and from school and we have just got her report in after her Christmas exams. She has settled in so well and is well above average in all her subjects. She now has a full time classroom assistant all to herself and gets on really well with her.

Sorry to have rambled on, but it's just to let you know that when we first got The ASD diagnosis we thought it was the end of the world, we just couldn't see how she could have a normal life etc. We got excellent advice from the National Autistic Society and we received ASD training from Barnardos. We put measures in place to help her lead a normal life, eg if we are going somewhere I'll tell her that we are leaving in 5 minutes and to get her coat etc. I know the places to avoid with regard to loud noises and strong smells. I have to get her to repeat instructions back to me to make sure she understands what I am asking her to do. I wouldn't change her for the world, as she is the most loving and caring little girl that you could ever meet.

With regard to your appointment, just do as you are doing, make a note of any problems that you are having, especially with regard to the sleeping, change of routine, basically everything that isn't seen as being 'normal' behaviour. Speak to the teachers and SENCO at school, even see if they can write a letter for you to take with you if your DD is having any difficulties in school. Google the National Autistic Society and ask them for advice, there is bound to be a local group in your area. Our local group is fantastic, H has had trampolining lessons, swimming lessons and attends a bi monthly Saturday morning group with kids her own age. They organise trips over the summer and she is going to see Little mix with them in November as they have managed to get the use of a box at our local concert venue.

Good luck and if you need any advice or tips, feel free to message me.

[DUNXandWILL]

Originally Posted by TC Devon

My daughter is 5 1/2 and we are waiting for a date to come through for an asd assessment with the specialist. We ve been seeing a different paed consultant and after a few appointments and monitoring she's put my dd forward for asd assessment. The letters come brought saying she's on the waiting list but it's a lengthy wait.
I'm wondering how to prepare her for this and what I can take with me to support my concerns. Or do i not prepare too much so they see her in action.

Finally those of you that have daughters on the spectrum what made you think they were a bit different and what are your top tips on helping your daughters.

My dd struggles with fiction v reality.
Food smells really upset her- pizza is the worst. She gags.
Incredibly limited diet. Certain textures make her vomit.
She hangs upside down all the time.
Stimming- I guess it's stimming. head bangs and spins in circles on her knees. She's likes the head rush.
Only wears a few clothes. Jeans are a huge no no. Wrinkly socks, hair clips, waist bands. So many clothes annoy her. They cause huge melt downs.
Says inappropriate things, does inappropriate things.
Sleep issues- bedtime routines are a pain and very lengthy. She wakes in the night. Can't self settle.
Never ever sits still (unless on iPad) bumps into things so covered in bruises.
Obsesses over things- currently trolls sound track. We listen to it all the time. She won't respond to us until the song she's watching and singing to has finished. True colours is on all the time.
Likes to make this weird yodelling type noise (ollllie ollllie oh uh)which drives me potty.
Fake cries and throws herself on the floor pretending to fall over. She's very dramatic and craves attention, reassurance.
Hates getting things wrong. 9/10 on a spelling test was the end of her little world. When listening g to her read I can't tell her if a word is wrong or even help her.
Does nt like having a supply teacher.

Im sure there's more.

She makes eye contact. Speech and language is excellent. She's loving but in a very different way to her brother. It's hard to explain but it's different.
Enjoys school and is now settled but never ever talks about it.

Finally can you recommend any reading I can do to help us help her. Right now I'm guessing!
Thanks

See more...

OMG it seems that we must be sharing a daughter - what you have described is my DD 100% - we have had an initial meeting with our local behavioural dept for children and i'm currently waiting on another meeting (DD to attend with me this time) for them to assess her!

The drama, inability to sit still, silly noises, eye contact, speech and language excellent and loving in a totally different way to her little brother is all 100% the same as what we are going through!

Wish I could be more help, but currently am sitting here in tears after 3.5 hours of trying to get her settled for what seems like the 100th day in a row (and i can still hear her running around upstairs like michael flatley) i'm pretty sure by the time I go to bed (around 12ish) she'll still be up and there will be some sort of excuse why she can't sleep... It's too hot, too cold, bed is too comfy, bed is uncomfortable, it's too light or it's too dark!

I had to fill out a questionnaire before attending my initial meeting with the Behavioural dept and the school was given a similar questionnaire - the school say they have noticed nothing about her behaviour that is alerting them to any issue but both of her nursery school teachers (2 different nursery's and 2 different teachers said they said there were/are signs that she would need to be assessed at a later date) She is currently in P2 (aged 6.5) and day to day in school the teacher says she is well behaved and absolutely no different to any other kids in her class. But at home she is EVERYTHING you have described! I actually don't know what to do next to try and help her.

I'll let you know when I hear anything further and if you want to PM me to have a rant you are more than welcome!

Dunx x

[Bootrip2]

Tbh i have lost count of the psychologists we have been to! DD seems to baffle them all! DD is at a special school so diagnosis not necessary foy to day stuff as she is well supported in many ways. We have been waiting for CAMHS for about two years. I dread to think what the future holds if we cannot get to the bottom of her anxieties and behaviours. X

[DUNXandWILL]

Originally Posted by Bootrip2

Tbh i have lost count of the psychologists we have been to! DD seems to baffle them all! DD is at a special school so diagnosis not necessary foy to day stuff as she is well supported in many ways. We have been waiting for CAMHS for about two years. I dread to think what the future holds if we cannot get to the bottom of her anxieties and behaviours. X

See more...

We haven't even got to see a psychologist yet and no contact with CAMHS as of yet but my DD's anxiety is getting worse every day! It totally kills me that I have a 4 year old DS who happy as can be and do laid back he's horizontal but I have my 6 year old DD who (I feel) has never had a stress free/anxiety free day since she was about 2 (that's the last time I can remember her being truly happy and carefree) I'd do anything to get her back to that relaxed way with nothing troubling her!

Dunx xx

[amy1511]

I couldn't read this and not comment.

Unfortunately I'm not much help but have been in a similar situation as you for a few years now.

My DS is 8 now, when he was 2 he was diagnosed as being epileptic, when he was about 2 and half I realized that he was very different to his 2 older siblings, and the older he got the more apparent it was. We had a few changes of pead consultant due to retirements etc, but when we met his current doc(when he was about 4) we explained our concerns with his behaviors and he explained that with his type of epilepsy add and asd are very common. At school they told us "he was just a boy" and the family liason would tell us that children with asd and add are often very different at home to at school, and the fact that he was ok at school was probably the preferred way as we wouldn't want phone calls all the time! The senco actually told me that until he was a problem at school he wasn't her problem(should have made a complaint, but she has since left) It was only when he got to year 3 through constant battling we actually got a teacher that was fully onboard with his lack of attention, and was very supportive of us. He is know in year 4 and said teacher has left and we are back to square 1.

His epilepsy consultant has actually said to us that he believes he has add and asd and we were referred to another doctor, but the first couple of appointments were fruitless because the school aren't on board, but in July 2016 he said he has enough evidence to pass it on to get the official diagnosis but we are yet to receive an appt, apparently they are 9months to a year behind! All medical professionals agree its just the waiting and the school that are the hold up, in the meantime our poor little boy is falling further behind at school, and just getting lost in a system :-(

I wouldn't change him for the world, but my god he is hard work. We say he has split personality he can be happy as larry(a bit manic) and then its like you flip a switch and he loses his rag and says how much he hates his life. He is very loving, sometimes to much when he wants to stroke my face for an hour, but then will hit his older siblings without a thought, and then can't understand why he cant do that. He is very funny with food (a nightmare the last time we were in disney), and certain noises just set him off. He also has obsessions, it changes but for the last month Ive had to listen to him sing Robbie Williams Love my Life! A little while ago it was about dying and death! He makes strange noises. He can't follow instruction, the mornings are a nightmare! He still soils himself and has issues cleaning himself. The list goes on...

I think the hardest thing is, is that to the outside world he is just a normal little boy, who is being naughty, and at school he isn't the same, and they don't recognize things that he struggles with like noise, despite him telling the teacher and getting upset!

Its just such a desperate fight to get him the help he needs, before his self esteem gets any lower.

Sorry for the ramble

[TC Devon]

Thank you everyone for your replies. We ve had a manic few days here and with my job. We tried to change bedtime- bad, bad idea. So we re back to laying with her.
I ve called asd paed consultant who called me back but I missed the call. The voicemail pretty much said her app has been expedited but regardless of that there is a big waiting list. I hate the not knowing. Is she asd/ADHD or just naughty? I spend my days treading on eggshells, praising the smallest of things- I probably sound insane congratulating an almost six year old for changing her knickers! Yesterday she hit me around the head and tried to bite me. She obviously denied this. I hate not knowing what it is and I hate not knowing how to deal with her.
She's fine in school. I'm sure they think I'm making it all up.