Autistic daughter, what do I do now?

simbalou

Thanks for reading this and I am hoping someone can point me in the right direction please.

My 3yo dd was diagnosed with high-functioning autism last week, wasn't a shock diagnosis but still upsetting when I heard the work from a professionals mouth. I was given a NAS booklet and basically sent on my way. All questions that I wanted to ask came to me when I got home so now I don't know what to do

She needs helps with social/emotional needs, esp at school where she finds change extremely hard to cope with. She has been treated as a 'normal' pupil up to now and it's not worked so I'm hoping she can get some help. How do I go about this? I've heard of SENCO's and statement of needs but do I have to sort this out?

I've also been advised about DLA but I don't feel like she's actually disabled and think a claim would be turned down as I was told that she would need more care than an average 3yo. Problems she has is that she will quite happily hold hands with anyone and walk off, she has no road safety, we can't EVER change direction when we go out (I've been known to walk round the block if I've forgotten something from the house rather than turn back!) She 'playfully' knocks her head against people but as she is below waist height we've had a few incidents with men in agony because of this . She has toilet 'issues' and sometimes sitting on there for upto 2 hours screaming and as our bathroom is upstairs I can't leave her on her own and I have a 6yo son to look after too. She will not share anything with her brother although she loves him dearly. He has to put up with all her tantrums and days out cut short because of his sisters temper and behaviour. Would anyone know if this information would help with a claim?

I work part time and have a wonderful childminder who helps as much as she can but I want to make sure that I can make my dd life as smooth as possible inside and out of school.

Thank you if you've read this far and would appreciate any comments or insights people have.

munchings-n-crunchings

Hello simbalou,

Your post brought back such happy memories :rolleyes:

I spent year avoiding shops due to wrong smells, too many colours, too noisy, crowded! it does eventually change. I understand all about the sense of danger stuff, and having to go specific routes to get to places. We have gone through every sort of obsession you could think of, from dinosaurs to faeries to ancient history, the lot. I know know, when one thing ends, another is round the corner.

My daughter was 8 when she was diagnosed with High functioning autism- Asperger Syndrome, and my son was 14, so at least you have the benefit of an early diagnosis. They are now 13 and 19.

Depending on your education authority, depends on your chances of getting a statement of special educational needs. I'm in Notts, and you need to fight long and hard, for me, it was not going to be worth the emotional strain.

I am caught, between should my daughter be treated like a 'normal' pupil or not.
And I have come to the conclusion, that yes she should. The world around her is not going to change, just because my daughter does not understand it, or it's social rules and niceties. My daughter is the one that needs to adapt and fit in, to what ever level she needs to. So between the hours on 7.30, when she gets on the train to go to school, and 5pm when she gets home, she wants to 'blend in' and be as normal as she can, and that is her decision.

Speak to your education department, and ask for their inclusion support service.
The often run workshops for parents with children diagnosed with forms of autism.
It will give you the chance to meet other parents, and find out what tactics have worked, and ideas for you to try.

With DLA, it can be hard to claim for a 3 year old, as the all need attention and supervision, what you need to base your application on, is the fact that your child is over and above what would be expected for a normal 3 year old.

If you look on the NAS Website, there may be a local branch yo can speak to.

It is hard work, but the more you understand about your daughter's diagnosis, the more effective you will be as a parent.

My son has now almost finished training to be a plasterer, and daughter goes to main stream school, with a great group of friends, and she couldn't be happier.

Feel free to pm me, and I'll always get back to you

Regards
Munchie

delerium

Hi Simbalou,

I can't offer the kind of personal touch that Munchie can offer with regard to bringing up a child with ASD high functioning or not, but as a health professional with in child and adolescent mental health I can make some suggestions about the DLA.

A lot of people I work with feel guilty or wrong about claiming DLA when they are striving to make life as 'normal' as possible, however, your daughter might not require too much additional financial input just now but think about all the little things. For example the time your daughter won't turn around and you have to go round trip twice on a bus train or even on your shoes.
When your daughter is head banging and gets upset and throws something which breaks?
When your daughter gets a specialist subject which involves watching a dvd over and over?

It's also not best to fill in the form yourself, get someone else who knows the family, knows the impact of the asd on the family and get them to paint the worst case scenario. It already sounds as if your 3 year old needs more attention than your average 3 year old which means you are entitled to DLA and shouldn't let the horrid comlex forms put you off.

Having filled them in in the past they are a massive headache but well worth filling in and I am more than happy to offer as much assistance as a stranger accross a forum can. Please feel free to PM me anytime.

Alison

Breast_Cancer_Survivor

Hi Simbalou,

My eldest son was diagnosed at 11 despite being described by his teacher as being "socially imature" when he started school at 4.

Ryan managed to survive (that's how i'd describe it) in mainstream education until he went to Comprehensive school when it unfortunately all became too much for him.

He now attends a residential school for boys with autistic spectrum disorders & is flourishing, his social skills have come on leaps & bounds.

I myself was diagnosed at the same time as my son although I was 33, I honestly believe that if id received the support my son received when I was a child my life would of been so much better.

You are lucky that your daughter was diagnosed so young as when she starts school she should receive the extra support she needs to help her make sense of the world around her.

All children with autism are different & only you know your daughter but I wouldn't let people make you feel embarrassed claiming DLA as your daughter will need more support & the money you are legally entitled to will really help.

I know from personal experience how hard it is to have autism & as a parent with autistic children I know how hard that is too so feel free to message me if you want to ask any other questions.

Good luck to you & your daughter, she may be a little different but whats wrong with being different, my son may be different but he is kind, loving & honest and I wouldn't change him for the world.

Vicki

cheap_charlie

My daughter received her diagnosis of autism at the same age as yours and I was actively encouraged to claim DLA for her.

I won't lie - I found the form hard to fill in - you have to face up to some stark facts about your child when you do it but having a 3 year old who isn't capable of speech and isn't toilet trained is a lot more work than a 3 year old who has mastered both of these things.

However getting the money enabled me to fund private speech therapy until I could get council funding for her, and to purchase things I never thought I would need, such as a harness for the car to stop her taking her seat belt off once she was a bit bigger.

I appreciate you don't view autism as a disability - I struggled with that word myself when she was first diagnosed - but it is one and she is absolutely entitled to DLA.

My daughter's claim is now indefinite, so clearly the government classify it as a disability too.

If you need to talk some more, feel free to PM me.

mummytofour

simbalou wrote: »

Thanks for reading this and I am hoping someone can point me in the right direction please.

My 3yo dd was diagnosed with high-functioning autism last week, wasn't a shock diagnosis but still upsetting when I heard the work from a professionals mouth. I was given a NAS booklet and basically sent on my way. All questions that I wanted to ask came to me when I got home so now I don't know what to do

She needs helps with social/emotional needs, esp at school where she finds change extremely hard to cope with. She has been treated as a 'normal' pupil up to now and it's not worked so I'm hoping she can get some help. How do I go about this? I've heard of SENCO's and statement of needs but do I have to sort this out?

I am not sure about the DLA things my older sone gets HRC and LRM. We first claimed when he was 6 as thats when the dx was issued. With my little one I am not sure what to do yet. I dont want to get turned down and like you perhaps feels some of his oddities are just him and the way it is. Plus there are a lot of emotional things attached to applying.

I guess you relly need to get some help with your DLA form from welfare rights or CAB. I may wait a while yet to apply....

I've also been advised about DLA but I don't feel like she's actually disabled and think a claim would be turned down as I was told that she would need more care than an average 3yo. Problems she has is that she will quite happily hold hands with anyone and walk off, she has no road safety, we can't EVER change direction when we go out (I've been known to walk round the block if I've forgotten something from the house rather than turn back!) She 'playfully' knocks her head against people but as she is below waist height we've had a few incidents with men in agony because of this . She has toilet 'issues' and sometimes sitting on there for upto 2 hours screaming and as our bathroom is upstairs I can't leave her on her own and I have a 6yo son to look after too. She will not share anything with her brother although she loves him dearly. He has to put up with all her tantrums and days out cut short because of his sisters temper and behaviour. Would anyone know if this information would help with a claim?

I work part time and have a wonderful childminder who helps as much as she can but I want to make sure that I can make my dd life as smooth as possible inside and out of school.

Thank you if you've read this far and would appreciate any comments or insights people have.

The same thing happed to me 2 weeks ago. My 3 yr old has been dx with high functioning Autism also. How are you feeling? The shock can be quite hard and the grieving also.

I have an 8 yr old with ADHD and high functioning autism but compared to the 3 yr old the 8 yr old has always pretty much reached his miles stones. I am finding the 3 yr old situation much harder and more scary to deal with.

There is a fab foram called asdfriendly.co.uk ( I think) pop over there for some support and if you feel like chatting, feel free to PM me.
Vxx

mummytofour

simbalou wrote: »

Thanks for reading this and I am hoping someone can point me in the right direction please.

My 3yo dd was diagnosed with high-functioning autism last week, wasn't a shock diagnosis but still upsetting when I heard the work from a professionals mouth. I was given a NAS booklet and basically sent on my way. All questions that I wanted to ask came to me when I got home so now I don't know what to do

She needs helps with social/emotional needs, esp at school where she finds change extremely hard to cope with. She has been treated as a 'normal' pupil up to now and it's not worked so I'm hoping she can get some help. How do I go about this? I've heard of SENCO's and statement of needs but do I have to sort this out?

I've also been advised about DLA but I don't feel like she's actually disabled and think a claim would be turned down as I was told that she would need more care than an average 3yo. Problems she has is that she will quite happily hold hands with anyone and walk off, she has no road safety, we can't EVER change direction when we go out (I've been known to walk round the block if I've forgotten something from the house rather than turn back!) She 'playfully' knocks her head against people but as she is below waist height we've had a few incidents with men in agony because of this . She has toilet 'issues' and sometimes sitting on there for upto 2 hours screaming and as our bathroom is upstairs I can't leave her on her own and I have a 6yo son to look after too. She will not share anything with her brother although she loves him dearly. He has to put up with all her tantrums and days out cut short because of his sisters temper and behaviour. Would anyone know if this information would help with a claim?

I work part time and have a wonderful childminder who helps as much as she can but I want to make sure that I can make my dd life as smooth as possible inside and out of school.

Thank you if you've read this far and would appreciate any comments or insights people have.

The same thing happed to me 2 weeks ago. My 3 yr old has been dx with high functioning Autism also. How are you feeling? The shock can be quite hard and the grieving also.

I have an 8 yr old with ADHD and high functioning autism but compared to the 3 yr old the 8 yr old has always pretty much reached his miles stones. I am finding the 3 yr old situation much harder and more scary to deal with.

There is a fab foram called asdfriendly.co.uk ( I think) pop over there for some support and if you feel like chatting, feel free to PM me.
Vxx

simbalou

Thank you everyone for your replies. I didn't think I'd feel anything about the diagnosis but every now and then I catch myself a bit tearful. The best thing about your replies are that I know that my daughter can have a bright future (with the help she's entitled to). I'll have a look at the asdfriendly.co.uk forum, thank you for that link.

I've ordered the dla claim pack and will make an appointment for someone to help fill it in. I've already started making a list of things that make life difficult for us and it's surprising how many things there are. I think as a family we've adjusted so much to her behaviour that it doesn't seem unusual anymore, it's only when other people comment or stare that I realise we aren't the 'norm'!

simbalou

It's been a while since I posted but I'm still in limbo. Sent off my dd's in August and so far have had letter back stating that they were going to get a consultants report (which is fine, she told me to apply for it at our second appointment). This morning I received a letter from DWP saying that they were now asking for a report from my GP which is a bit worrying. I have never spoken to my GP about dd, I simply went through the Health Visitors at the doctors as they are more easily accessible. I'm now worried that the GP will complete a report having never seen my daughter and not know the issues that she's goes through daily.

DD came on leaps and bounds for a few weeks and I honestly started to doubt the diagnosis was entirely correct but at the moment she's regressing at an alarming rate. Waking constantly through the night, tantrums, obsessed by asking same questions etc and I'm so tired of it all.

School won't help at all as she seems to be coping fine there. The school holidays set her back due to the lack of routine. They only give extra support to badly behaved children it seems. My dd excells in some things (word recognition, numbers etc) and surely this could be encouraged by extra help?

Sorry if I'm rambling but it all spills out once I start writing.

tashmatthews

Good luck OP

My 10 yr old son has been diagnosed with ASD

It is challenging in every aspect

In regards to your DLA, I have had no joy from them at all, even though he needs more care than a boy of his age, however all cases are different, even though my son is due to be statmentated, he is going to go to a mainstream school, just means that the school will know about his needs before he gets there which is what my main concern was, as his first Primary school before being moved bullied him terribly!!

Good Luck with everything

starnight_2

simbalou - I think the first thing you need to do is phone and talk to your GP to make them aware of the difficulties and that they will be getting a form from DLA etc. It might help.

Hopefullly as the school term progresses your DD will start to settle down again

Good luck
xx