I`m almost certain my dd almost 18 has a type of autistic spectrum disorder - what next ?

[fakeblondie]

Ok about 12 years ago i read an article and knew immediately that my dd was having vacant seizures-hundreds of them a day .You know when you just really know youve realised something as a mum- and you totally know your hit on something. Well without going inton the mass of symptoms ive always known our dd has something else going on too .She is no longer epileptic but what i would call high maintanence-not in a horrible way-just that its like having a 2 year old in the house not a nearly 18 yr old.
I know you prob think oh shes just a normal teen but she really isnt a normal teen.
We now have dd 15 ds 7 and dd 3 months-i`m very concious that her day to day need for constant attention to get anything done is having a negative impact on the little ones.
They have to listen to it all day every day.Nothing what so ever is straight forward with her because she genuinly has little comprehension of communication or socialisation skills in every day life.
Put her in a room at a posh ball and she will hold her own with the adults-put her in a room with peers and she just stares at them-i could go on and on.

Its like having a tot year in the house she is umbelievably hard work-a delightful girl whom we love dearly - but i think her life would be a lot easier (and ours and her siblings ) if i sit down and address this and perhaps make changes to reflect a diagnosis to help her and us.
She is hoping to go to Uni next year and something needs sorting before this time because without sounding negative (you need to know her ) she just will not manage. People say things like oh shell be fine- but they really dont know what living with her is like and she really really is going to struggle. We are at the end of our teather with worry and constant upset at home.Its like she really cant comprehend others feelings and i have to sit her down and say why her brother is crying ,because she hid his toy which isnt nice ect and then it dawns on her that yes it was mean and shell say sorry.
Or that playing with all the little ones at the christeneing on the floor with her skirt around her hips is inappropriate because shes nearly 18 (and very beautiful )and noone knows where to look ! So i go over and tell her and she thinks im being mean and starts shouting. Should i make an appt. first myself at the GPs ? She is very sensetive and would see going togeteher as hearing me put her down, not as listing my concerns ?

DD i think knows something is wrong.
I`m thinking maybe a diagnosis would label her for life-but maybe she might get some extra help with her education ??
I feel like she is sort of floating thro life in a dream and prob thinks her entire life is spent being shouted at when actually its not her fault ?
Should i go private ?
Who should i ask the gp to refer to ?
I have an excellent relationship with her GP who is not mine ( i work with them ).
Any tips would be most welcome.
Thank you.

OK.

There is a most definite correlation between epilepsy and asd so well worth an assessment I think. Adult services are very scarce and most people with a HFA / AS diagnosis would not get them sadly but teh exception tends to be in University so this would be absolutely the right time to go for it.

Except.

You will first need to speak to your GP and find out fi tehre is an adult diagnostics service in your area. In some palces there simply is not.

If there isn;t and GP is willing there is a team at the Gwent in Newport I beleive who take in referrals and presumably others around the UK.

Thats great we live in shropshire and Newport is quite commutable !

Interesting about the correlation with epilepsy . She still gets a few symptoms-cant go without food or sleep or she gets really clamy and is sick .

You may well find there is a system in palce where you re but always worth knowing JIC.

If you want to message me I have powerpoint on ASD from uni I am happy to send over, wrt to diagnosis etc.

Gosh, that is tough. I don't really have any concrete advice because I haven't been in your shoes with an older child and possible ASD. What does seem clear to me though, is that at nearly 18 she has to want to get a diagnosis herself and for that she has to realise something is wrong otherwise you are going to have a tough time getting her to see anybody.

I would have a chat with her GP first to see what they suggest, especially since you know them well. Then if you can, persuade her to see the GP by herself, so she can take responsibility for herself. You don't need ot be there but you will have got your concerns across previously. Probably she will be referred to clinical psychologist if the GP thinks there is reason to do so.

TBH as a mother of a DS with AS (he is only 10) I am not sure there is very much help she can access as an adult, especially as she has managed this far in her life without help. But on the other hand, if she doesn't know what it wrong with her, she won't be able to tell people and nobody will be able to make allowances for her. She also won't get the opportunity to modify her behaviour and develop some self awareness of why she behaves differently.

The whole 'labelling' thing is a double edged sword ime - if you tell people there is something wrong with you, then you have to deal with their expectations of what a person with ASD is like and what they are capable of and if you don't then you have to deal with them thinking of you as odd/lazy/unfriendly etc. I suppose if it helps you all to understand each other better as a family then it is more worth it than not but do be aware that having a diagnosis won't necessarily change anything.

Niecie-wouldnt she get some extra support at uni ?
She wants to do her teacher training and i think shell get there but will take her longer than most-very prob an extra year in 6th form now i`ve pulled the plug on my parents doing her coursework for her !

I think she`d go to the GP herself.

Sanct id love to read your ppp-ill message you and thank you

The Uiversity I am close to (Newport aagin LOL) specialises in teacher training and has a dedicated ASD support worker who would be actively trying to help her; theya re also allied to teh Dyscovery centre so very SEN proactive.

Maybe e-mail them?

wow !

As someone on the autism spectrum, I can honestly say that getting a diagnosis was a huge relief to me. It explained so much and allowed me to access all sorts of services that I couldn't access before.

I've never told people there's something 'wrong' with me, as such. There's certainly a lot that's very different and very specialised about me, but it's not wrong to be very different and have very different needs. We can bring a huge amount to the world, if only it will let us show what we can do. Different things, different insights, different skills and talents, or different ways of looking at the world. No matter what our IQ.

I wish with all my heart that people would (just once) say "wow! Tell me all about it!" when I tell them I'm ASC, instead of "oh how awful". It's not awful. Well, it becomes awful when nearly everyone has such negative views of how we are and how we communicate, instead of being curious and wanting to know more

You can also pay privately for diagnosis, but it's expensive.