I think my 18 daughter my have autism spectrum disorder.

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My daughter will almost be 19 years old.  She has

Neurofibromitosis type 1 (NF1).  Recently I googled NF1 and autism, because I feel she is too different and may never move out of the house because of it.  Can anyone tell me if they have experienced anything to do with autism spectrum disorder.  I reall y information.

Thanks.

0 likes, 11 replies

Report

11 Replies

  • Posted

    My daughter has high functioning autism. We are in the UK and have hid understanding of how to access services here.
    Report
    • Posted

      My daughter is high functioning as well.  What do you mean in the way of services?

       

      Report
    • Posted

      We have found CBT / art therapy really helpful at getting her to communicate her needs better.  

      She went on the REACH course run by MIND to manage her anxiety (referral from CAMHS).  

      She has melatonin to get off to sleep and improve her quality of sleep at night.  

      We tend to text now as well as talking, as she can re-read what I'm trying to explain and work through her frustration without exploding with us.

      ZAP assertiveness training course for bullied children run by Kidscape (best thing we ever did) - Year 8

      Sports leadership course (Year 7) - showed a skill with young children

      Tortoise group to "come out of her shell" (primary school)

      Friendship group

       

      Report
    • Posted

      Thank you so much.  I appreciate any information I can get.  I kind of am struggling right now.  I have learned (without suspecting Asperger's) what can set her off and have tried my hardest to not do anything that will.  My husband doesn't understand there is something "different" about her and that doesn't help.  Thanks again, Sheila

      Report
    • Posted

      Funny, I had just mentioned to her a couple of times that we ought to try melatonin.  I am for sure now. lol.
      Report
  • Posted

    I am a adult female I have austic spectrum disorder ..I'm 43 ..I was told it was previously a male condition but more & more females are growing up as adults & diagnosed with autism spectrum disorder ....I also have a learning disability & have been diagnosed throughout my life by various Pychiactrists with different types of mental disorders only to be formally diagnosed in 2014 September with autism spectrum disorder I find social interaction particularly hard..Which many people who have autism will find ..Sensory TO light is another one florescent lighting really effects me ..Also the old melt downs .It's very different from someone who is angry or having a temper tantrum it's completely different ..Each autistic person who has a melt down are entirely different ...Also a sensory overload to loud noise when I go into a shopping centre i hear sounds of peoples feet & I hear people speaking hundreds of times louder than the average person who isn't austic ..Sounds are quite scary to me ..I've had to adapt to them which are particularly hard so I'm not sure if your 19 year daughter has sensitivity to sounds or light ..Another one to look out for is touch like fabrics wool Nylon polyester. SPONGE..Velvet I'm terrible in a clothes shop I have to touch all the fabrics to make sure they are not fabrics that I refuse to wear most adults with autism dont like certain textures to clothing & refuse to even wear them that for me and many others is a sensory overload Another one I get told and many other austic adults get told and also austic children is that we tend to repeat things quite frequently like a parrot ...Which in my view i know I get told that I also agree I do ..But I don't half the time realise that I repeat myself till after someone has told me ..Many austic adults & children have a photographic memory ...More advanced than most .. So I can rember people's faces but wouldn't rember their names ..As I can't rember people's names that particularly well..I also have a learning disability that I was born with so I haven't got Aspergergs..I have austic spectrum disorder ..High functioning & low functioning don't really mean anything about the person who has autism so if this ever is mentioned to you don't take that personally as many proffesinals still don't really understand the differences between the two of them Another one to look out for is do you have many special interests ..& do you talk about them to everyone as many austic adults & children with autism have a special interests in certain things of their choices that they are particularly fascinated in i know I do which are blue cars & cats ..& smart phones ...Lots of people who have autism will tell you how they see it & our often straight to the point ..We take things often far to literally ..We often are known as quite chatty & sometimes we talk to much that the other person we are speaking to doesn't get a word in edge ways ..We often don't get jokes..It's not because we refuse not to get involved in them it's that we don't understand what they actually mean & we often can read a letter but then the problem is we don't then understand what the letter has actually ment causing a sensory overload Certain complicated words I don't understand so it causes anxiety & stress & upset Some of us have a few friends & some of us keep ourselves to ourselves.. Their are some good autism teams out their ..But I've found often their is a lack of understanding in community mental health services ..If you have a autism ..Which isn't a mental health problem or a learning disability often misunderstandings can & do accur with professionals ..One team may say something entirely different to a new team you where recently moved under which I have found out its a post code lottery where u live their are some really good teams out their ..But on the opposite side their are also some NOT so good teams .. .I have had good positive care previously from brilliant community mental health teams & a previous good social worker about 10 years ago from a different areas to where I'm lIving now In the area I'm in at the moment it's been a negative experience but they are all not like that it depends on what part of the UK that you live so don't ever give up..Some NHS trusts don't always fund a autism assessment to see if you have autism so you may have to ask your GP if their area will fund for you to get a autism diagnosis so I thought I'd mention that ....Don't ever give up though ..Took me 42 years to finally find out that I had austic spectrum disorder & I'm a female..Autism effects us all entirely different ....living autism in Wetherby is a organisation that is for autistic children & adults & they can provide online advice to anyone living with autism who needs advice on autism if you Google autism living in Wetherby it's a helpful organisation who provides a free telephone number which you can call & they can advise you on specialist child & adult organisations to help you it's a free service so I fully recommended them as they have previous helped me ..Hope that helps you

    Report
  • Posted

    For us, the first person to speak to was my daughter's GP who did a pre-assessment autism questionnaire. When that indicated positive for autism, we were sent for an autism assessment and Aspergers was diagnosed. There's some good information on 'autism West Midlands' website.

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up