One year on

[MrsD]

Hi all,

 

I'm new to this forum, I posted on Meet & Greet recently. I have twins, soon to be 3 years old. I posted originally about my son who I know has autism (moderate has been suggested by the psychologist). He's not been formally diagnosed yet but the CARS form was done last week. There's loads of stuff going on with professionals and he will be diagnosed soon.

 

Anyway, this post is about his twin sister! She has some odd behaviour. I would call it odd but these are my only 2 children so they're all I've known. She is on the waiting list for the psychologist too. I've spoke to the psychologist in the past about her minor quirky ways and last week she suggested my daughter may be mildly affected by autism. I'm not too worried because it's so minor I think she will overcome the problems in time.

 

I would really appreciate any opinions you may have on her 'strange' behaviour. I personally do think there is some ASD there. This is what I think is strange:

 

If she has a cardigan/coat with a hood on, it ALWAYS has to be up, even if it's hot and sunny.

She absolutely refuses to move to a bed, says she doesn't like it. I bought her a bed a year ago and sold it 6 months later because there was no way she was going in a bed.

There's a small extra quilt hanging over the end of her cot which was used on cold nights. As it's warmer now, I took it off to put it away in the airing cupboard. She got very distressed and told me to put it back.

Shoe shopping is a complete nightmare. I took her to Clarks last week, you had to see it to believe it. She tried to hit the assistant, threw the new shoes, kicked/ screamed/shouted, tried to grab and throw the shoe gauge at the assistant (needless to say we didn't get any new shoes).

She refuses to wear anything in her hair. I put my hair in bunches (and her dollies), she went spare, pulling them out.

She refuses to wear skirts & dresses. If you can manage to get one on, she's hysterical/distressed.

Our car is parked in the drive, when we go anywhere, 99% of the time I turn right. When I turn left, she creates, shouts, screams, "wrong way" "other way".

She's just started having to walk up into the car (she used to be lifted in to the car seat). Recently she has to say "up the step" and get herself into the car. If I don't allow her to do this she creates, goes rigid on me and wants to get out and do it again.

I bought a different coloured beaker, same as she already has. She said she don't like it, pushes it away and won't drink out of it.

 

That's most of the things which I think are strange. Saying that, she has brilliant eye contact, is a little behind with her speech and is very good in social situations, maybe a little shy sometimes.

 

Thanks for reading.

 

 

My daughter has been under the care of the clinical psychologist at the local children's development centre for the past 18 months. The psychologist is leaving and has been told to 'wrap up her cases'. She offered me a diagnosis for my daughter of "high functioning autism". I accepted the diagnosis but then thought about it for a few days, phoned the psychologist and said I didn't want her diagnosed yet and that I wanted to see how she got on at school - which was the original plan suggested to me. I don't know if I've done right. I DO anticipate problems at school but do I need a diagnosis to get help for my daughter? My daughter only has a mild spectrum disorder and there are family and friends that refuse she has any problems. Any thoughts appreciated.

Edited June 18, 2010 by MrsD

[justine1]

Hi

The simple answer is yes you do need a diagnosis to get help she needs at school!!!

I think if you have been given a diagnosis you need to get it in writing soon.My son is six and for various reasons I was unable to take him to the GP for his difficulties until last August(a week after his 6th birthday) he got his diagnosis last December.He had been having problems since starting reception but things got worse last June,before his diagnosis,school put him on IEPs and School action but couldnt do anything else.When he returned to school in Yr 2 he was moved to school action plus and things continued to go down hill,school couldnt do anything without a diagnosis,no ed psych nothing!!!!

Even after being excluded twice! After his diagnosis came through(which took three mths)the school still struggled to get outside help.

 

Now he has been excluded four times,is on part time schooling since january and has missed out most of yr 2.So my point is if I had his diagnosis before he started school I wouldnt be where I am now.Yes she may not need additional help at school at all but better to be safe than sorry.My son also never needed help in reception and most of yr 1 but now its another story.

[daniels-mum]

Hi, I can only speak from personal experience but I would say having a diagnosis will help things alot. If nothing else it is a simpler way of explaining things and getting school to understand her difficulties. It may also help to access services that would be otherwise not available to her. Also it may make it easier if you need to look at resourced provision aloth further down the line, although I am not for a minute saying she will need that, its just you never know how things will progress.

 

I still havent got an NHS diagnosis for my son at 12 yrs, both his schools, Paedtrician, Ed Psyc plus all my family think he is on the spectrum but CAMHS (who are the ones that count in my area, when it comes to diagnosis) have decided he doesnt, although they agree he has autistic traits. He has a CAMHS diagnosis of Dyspraxia, Sensory Processing Disorder, Significant Social & Communication Difficulties, Auditory Prcoessing but still no diagnosis of AS. They have however said that they will keep reviewing him over the next few years so this isnt set in stone. I am sure it would have been easier to get a statement for my son with an AS diagnosis in addition to the others, I did get there in the end, but only after a year of stress and a full tribunal hearing.

 

So if there is any way you can get back in touch with the psychologist who offered the diagnosis I would take her up on it, you only need to disclose it to who you decide and if it turns out she can get by without it all the better, thats great, but if not I think it will make the coming years easier for you if she does have a diagnosis.

 

Good luck, I am sure whatever you decide it will be the right decision as you know your child better than anyone xx

 

 

[coolblue]

I agree I think a diagnosis would be helpful to your daughter, but only, in the words of my son's paediatrician, because it will offer some protection from the system!

 

In theory, children's educational and medical needs are supposed to be supported according to need, not according to diagnosis. In addition, autism is a set of behavioural characteristics that could be caused by different things in different children, not a single medical condition that children have or do not have, which is why getting a diagnosis can be problematic.

 

For example, both my children have sensory issues. In my son's case they have resulted in him showing clearly autistic characteristics - problems with social interaction, speech and language, restricted behaviours and various specific learning difficulties - and he has a formal diagnosis. But he has no difficulty making eye contact or and often works out what other people are thinking. In my daughter's case there is no way she would get a diagnosis of autism, but some of her sensory hypersensitivities (such as with the taste and texture of food, for example) are more marked than his and she definitely shares some of his traits.

 

So I would say don't set too much store on the diagnosis in case you don't get one for your daughter - but do emphasise your daughter's specific needs and the support they require.

 

cb

Edited June 19, 2010 by coolblue

[puffin]

I think that it will be a lot easier for your daughter to access help in the school system if she has a formal diagnosis - it is not an easy decision but this is the way it is in the current system of cutbacks etc

 

It would be a different situation if you did not anticipate her needing help but if you do I would make sure that you get one ASAP - there is no guarantee that a new psychologist will take the same line as sometimes there can be differences of opinions - and you may have to start again in the diagnosis process after she starts school

 

My own daughter has Aspergers and performs very well academically - however she needs support with social skills and the diagnosis was essential for getting that help otherwise there are some schools who put everything down to *bad behaviour/ bad parenting*

[MrsD]

Thank you all for your replies.

 

Puffin - Yes, that's what I am thinking... when we get a new psychologist, she may have a different opinion and a diagnosis may be hard to get. 6 months ago I didn't anticipate my daughter needing help at school BUT for some reason her difficulties are becoming more evident. I know she will do academically well but it is her social side that I think will be a problem.

 

I am going to phone the psychologist on Monday and take up the offer of a diagnosis.

 

[cmuir]

Hi

 

I really do believe there value in having a diagnosis irrespective of whether your daughter is regarded as mild or otherwise. The fact is, whilst things may go well for a while, you may encounter issues further down the line. A diagnosis is something that's generally very difficult to get as consultant's need to be certain that it's right and therefore if things change further down the line you may well find it's a long road. Whilst children with additional should/are supposed to receive support irrespective of whether they have a formal diagnosis, in my experience, I certainly found that wasn't the case until my son was formally diagnosed. My son was diagnosed 4 years ago with AS (he's not 8.5) and I've encountered one or two individuals who don't think there's anything wrong with him. Indeed, he's regarded as 'mild', but there's nothing mild about his meltdowns and some of the issues/difficulties that he faces. I quite simply don't care what others think about my son's diagnosis – I soon learnt that he was my number one and to be frank I simply wasn't emotionally equipped to care or deal with what others thought - my son can be all-consuming. The other thing I'd like to add is that my son was only very recently diagnosed with dysgraphia, dyspraxia and is suspected as being dyslexic also. These are disorders which are associated with/can be part and parcel of having an ASD and it's something that I simply couldn't have pre-empted. All in all, I'm very much pro-diagnosis.

 

Caroline.

[trekster]

Mine is mild AS, but personally the term mild can be misleading. All it means is "you expressed mild traits of aspergers on the day of assessment". Yesterday morning when my brother was getting annoyed because i woke him up (and wouldn't accept it was an accident) i was more severe AS than my mild diagnosis would suggest.

 

A diagnosis can lead to lots of things, if you have an autism specific school or service in your area you could be eligible (sp?) to access it.

A diagnosis can help you explain your child's difficulties to others who dont know your child (and even to those that think they do). A diagnosis doesn't automatically entitle you to benefits like DLA but can support your case when applying.

A diagnosis can help your daughter understand herself (a few years when i was desperate for understanding following diagnosis i read Tony Attwoods book for parents so i could tell how i seemed to my carers).

A diagnosis might help you to access family counselling and also other psyc support for your daughter.

Not sure if you need a diagnosis for a statement? as i was diagnosed age 16.

For me a diagnosis meant i could apply for this housing association place i am now in!

Carers allowance could increase as your needs will have changed following your daughters diagnosis.

 

Some female autistics have found a way to blend into the background so their autism can be missed and their needs unmet.

i have found ways of trying to manage my anxiety so i can think for myself better. There are some issues of my AS i struggle with such as being easily distracted and being unable to sleep in a bed at times (im on my sofa) because it reminds me of uni.

[shaz71]

I think that it will be a lot easier for your daughter to access help in the school system if she has a formal diagnosis - it is not an easy decision but this is the way it is in the current system of cutbacks etc

 

It would be a different situation if you did not anticipate her needing help but if you do I would make sure that you get one ASAP - there is no guarantee that a new psychologist will take the same line as sometimes there can be differences of opinions - and you may have to start again in the diagnosis process after she starts school

 

My own daughter has Aspergers and performs very well academically - however she needs support with social skills and the diagnosis was essential for getting that help otherwise there are some schools who put everything down to *bad behaviour/ bad parenting*

 

 

Hi puffin and everyone else, i am in this situation at the moment, i went to cahms as melissa was showing autistic tendencies but because me and her dad had just fallen out they blamed that, so another 2yrs down the line she is a lot better but is still struggling with her education and still likes dinosaurs and mega into animals. But i get lots of free trips to bond with her, as they obviously think that this is the problem i think they think i sit in one room and don't spend time with my kids, yes she does have a younger sibling, but she was found to behind 2yr in speech and language 2yrs ago but because at the time the school said nothing was wrong and she was doing fine until she got to yr 2 sats and if they would have let her sit them like all the other children they would have looked bad on paper as she would have gotten a w, she is going into yr4 this sept and at the moment at level 1b tops as she was at level 1c in march, she as recently been diagnosed with having silent reflux, as irlens and has some sensory issues but obviously it must be down to me not bonding with her (a bit of sarcasm) it is pathetic, it is a wonder that they aren't doing it moreso so it doesn't cost the government anything blame the parent syndrome. Also meant to mention how she talks to the sky when talking to her friends or following them when they are stepping backwards to create themselves personal space.....but again it must be down to not bonding properly......what a load of old tosh..........Sharon x

[edith simon]

My daughter has been under the care of the clinical psychologist at the local children's development centre for the past 18 months. The psychologist is leaving and has been told to 'wrap up her cases'. She offered me a diagnosis for my daughter of "high functioning autism". I accepted the diagnosis but then thought about it for a few days, phoned the psychologist and said I didn't want her diagnosed yet and that I wanted to see how she got on at school - which was the original plan suggested to me. I don't know if I've done right. I DO anticipate problems at school but do I need a diagnosis to get help for my daughter? My daughter only has a mild spectrum disorder and there are family and friends that refuse she has any problems. Any thoughts appreciated.

I think definitely yes as if thre is problem at school you will not get help otherwise.

I think if she turned out to be not on ASD then later you can remove it.

Edith