Don't know where to start : I have a daughter... - Autism Support

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Don't know where to start

mumto407 profile image
19 Replies

I have a daughter at the age of 15 she has ADHD and just recently just been diagnosed with having a low mentality level compared to other peers her age she is well below average her vocal comp is only scoring 1 and it is meant to be 50 there are other things I have noticed about her she does not have friends she gets uptight in a social atmosphere at school home or outside she can hold herself back from melt down until she gets to the comfort of her own home then the melt down starts, she has no friends she cant keep friends, she is excluded from outings with friends she is treated differently, I find it difficult to get her to bathe herself i need to keep nipping at her to take a shower she also needs things to be in a specific order or if its pens or loom bands they have to be in the bags that have them in ( e.g purple bands in the bag with purple and red with red if there is a bag with different coloured bands in she goes nuts and sorts them all out all 60 bags of them im sure this isn't right. I have been told by her consultant that it's a teenager thing but i'm not so sure. She also has vocal ticks and has problems with aggression if something in her life has changed can anyone tell me if this is even mild signs of autism because her consultant wont test her. Any information will be good

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19 Replies
Chris21 profile image
Chris21

It doesn't sound like a 'teenage' thing. The problem with all conditions they can overlap each other, Sometimes consultants are reluctant to diagnose too many different conditions as it can cause confusion to which treatment you should follow. The traits that you describe could be ADHD or Autism or even some of it sounds like OCD.

Have the school that your daughter attends any thoughts? The National Autistic Society have a helpline that might be able to help?

mumto407 profile image
mumto407 in reply to Chris21

The school are not Interested in what is going on we have asked for her to be tested but the consultant won't do it we are trying to get her referred to the relevant people who deals with it

hicks50 profile image
hicks50 in reply to mumto407

Hi I'm new to this site but my heart go's out to you,it took me 8 years to get my now 15 year old son diagnosed,and some of the problems you have with your daughter are very similar to my sons.He to cant cope with any form of social gathering or cope with to many people he attends a special needs school and even has a reduced time table and this can still be hard on him.eveything has to be routine or he as a melt down or self harms.only has 1 or 2 close friends, we also have problems on the hygiene side of things,it seems to me some of things your daughter is going through could well be aspergers which is an A.S.D. my son also has A.D.H.D. O.D.D .Keep on at your GP and good luck

mumto407 profile image
mumto407 in reply to hicks50

Forgot to mention she also had ADHD and ODD and conduct disorder she has had a maturity test done and has resulted in being well below average her vocal comprehension is only 1% the report says 99% of kids her age could do the tests quickly and better than my daughter but the school and her consultant isn't concerned

mumto407 profile image
mumto407

Thank you for your reply my daughter can go weeks without washing she can't understand when she is In danger she wont do any social event at all she won't have a meltdown where she is she tends to hold it back and then let it go when we get home

Mumski profile image
Mumski in reply to mumto407

Make a note of everything you can think of for her assessment when you eventually get one.

hicks50 profile image
hicks50

sounds so much like my son only difference is you can hold a conversation with him and his process speed is very high everything else is below par sounds a lot like aspergers and my son will only wash on a sunday he to has his melt downs at home this is because they feel safe here if I can help in any way or you need a friendly ear to chat to some one going through the same thing then feel free to message me at phicks50@sky.com

Mumski profile image
Mumski in reply to hicks50

My son will not have a bath because strangers have used it. We had a brand new bathroom fitted in our old house but now we've moved and I can't afford to do it. He'll get in the shower after a bit of prodding but has to wear sandals.

mumto407 profile image
mumto407

My daughter has aggressive meltdowns she is aggressive to everyone. Does your son collect things he can keep hidden my daughter does she has become something of a hoarder she keeps everything its all things she can hide like old keys and things like that

hicks50 profile image
hicks50

yes my son has many collections from beanie toys to pin badges.you name it he proberly has it he wont even through away his baby toys thank goodness for a very large attic. also been through the stage of eating everything from tv controls to rulers anything he could get his teeth into. now on to the stage of seeing how things work this is becoming very expensive because he has dismantled phones laptops tablets you name it he has taken it apart beyond repair and each new stage is a learning curve for us all but I can say hand on heart I would not have him any other way he can be the most loving child going. back to collections he has tins and tins of buttons and the thing that frustrates me more then anything is the amount of pens he brakes

mumto407 profile image
mumto407 in reply to hicks50

I understand the pens lol my daughter has taken to loom bands she has about 4 boxes of them and about 30-40 freezer bags full and if they have 1 colour in it that's not meant to be in there she will sort out every bag she has and more if she can I have been asking for help but still nothing she has just turned 16 so it gets harder

hicks50 profile image
hicks50

I know how hard and frustrating this can be and the only thing I can say is go to your own doctor and get them to refer her this is what I had to do with my son and my daughter has just done the same thing for my granddaughter as for the schools none of them are bothered just want the attendance up to par but with my son this is never going to happen even since September managed 11 out of 44 every time something happens to your daughter take her to your gp will refer her in the end just don't give up keep going you will win in the end

mumto407 profile image
mumto407

I will thank you. Here is my contact if u want to message me.

Jeanbrogan1@live.co.uk

hicks50 profile image
hicks50

thank you I will e-mail you to see how things are going and it is good to know there is someone else to talk to who is having the same issues and understands what you as a family are going through best of luck to you all and I will be in touch

mumto407 profile image
mumto407

I would like that thank you very much

hicks50 profile image
hicks50

by the way my name is Pauline and my son is mark

I have two sons who have recently been diagnosed with Asbergers, one at 17 the other 18. The younger one was written off at school as lazy. Schools had not referred him to CAMHS. They agreed to Asbergers but failed to recognise he had ADHD when he was small , now has ADD. Meds are being discussed as he has sleep and eating issues.

The older son was one of the brightest children entering High School, due to incompetence with education system and NHS will now live on benefits. He also has Epilepsy

Can I suggest first of all look at the bigger picture. Family history is really important. Do any of your family have Epilepsy, AS, Dyslexia, Dyspraxia, Tourette's , anything like that on the spectrum. Go back as far as you can, Great Granparents. Once you have someone on the spectrum there is the first red flag. Then you look for not working out what happens next in behaviour . An example of this is homework, can understand that it's got to be done on Tuesday night for Wednesday. Meltdowns. Eating, too much , too little, obsessions, routines, tummy upsets, not wanting to go to school, walking on tippy toes, washing, staying in room, staying up all hours, telling tales, no or limited friends, just saying no I don't want to do that, self harm, the list goes on and on. Remember each person with Autism is unique, may only have one or two traits.

The easiest diagnosis for Consultants is ADHD, when it could be a combination. I have recently been diagnosed with Dyslexia, Dyspraxia, Dysculasia and now being assessed for ADD. Worked out husband had AS and father had Dyslexia.

I live in Scotland, the awareness is appaling. There are a very limited number of schools getting it correct but so many failing children and adults.

I wish you get the diagnosis you require. It's too easy for Consultants to make wrong diagnosis and stick kids on Meds . If you remember that the majority of folks, so called professionals are CLUELESS , don't give up you will get the answers. Forgot to mention 18 year old was diagnosed with borderline Dyspraxia when he was 5. He could not react properly to bullying, just stood there or went into rages.

Have you got the equilivant to Enquire in England? They are excellent, I live in Scotland, told me what I was entitled to, in the way of assessments., depends on school, most tell you nothing till it's too late or you find out afterwards.

mumto407 profile image
mumto407 in reply to

I live in Scotland too and my daughter has done most of what you have listed I think my mum had it bit undiagnosed looking back at her behaviour when growing up I have been to educational psychology and she has said there is nothing wrong with my daughter she has adhd add odd conduct disorder vocal tic's severe aggression the list goes on the psychologist has sad no to autism or aspergers

Mumski profile image
Mumski

I've only just found this site so I hope you've had some success in getting your daughter diagnosed. My son has Aspergers and Dyslexia and it's taken us two years to get him properly assessed and we still can't access any help or support.

We started by changing our GP and telling her all our problems till she referred him for an assessment. He was told the date and went to the appointment only to be told that it was a pre assessment. Just to see if he actually needed one.

A real assessment could be up to three years away. After endless phone calls and complaints we got his assessment on the grounds that he was applying to uni and needed the support now.

I does sound a little like your daughter has some traits associated with Autism. My son went on loads of websites that assess you and diagnosed himself.

It was a great relief for him when he was diagnosed. He said that he could stop pretending to be normal all the time as it was making him physically ill. He had loads of different ticks and had cracked teeth from clenching them.

You probably already have this info but this looks helpful: autism.org.uk/About/Diagnos...

Best of luck, I hope you've got some support and help by now.

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