Published on 12, July, 2020
Hello everyone, thank you for taking the time to read my post I will be very grateful if you could help us in anyway at all!
My daughter has had a hard life since birth and myself and partner knew something was not right with her! Even more so after having 3more children. However we never got the help we should had and if I was to go into everything I think you would give up reading my post!
To cut a long story short my daughter is almost 16 she has been under CAMHS for 10years (unhelpful) they have been! She would not go to school and we was taking to court! Our solicitor had a doctor come do assessment's on her and finally after months of tests and assessment and years of hard work raising her we are told she has Asperger's
We really are at our wits end and so so worried about her we love her with all our heart and can not see her like this no more! She don't leave her room she has very bad anxiety and depression disorder she will not socialize at all!! The doctor who diagnosed her was absolutely amazing and said she feels for our daughter deeply she said she tells parents with children the age of 5 we need to do something now before they end up like this! She said the this is our daughter (not in a mean way) she says the system let our daughter down!
The reason we come to you for help is we don't know where to turn or much about Asperger's, CAMHS are no help at all and I don't know what help is available for her. Can you help us with any advice such as sites we can visit help we can access things she maybe entitled to? Any help will be greatly appreciated. I apologize for such a long post and if you have made it to the end I thank you so much for your time and any advice you can offer us. Thank you
I would start by reading Tony Attwood's a complete guide to autism.
We too have a recently diagnosed 16 y/o girl. She still attends school but only because this charter school (we are in NZ) doesn't push her when she gets stuck. We also have her bio-mother resistant to any kind of intervention and the family court not considering that a kid with ASD may not be the best person to make her own decisions about which parent she lives with.
SD16 is beginning to recognise that there is a difference in the two households but unless she makes a clear choice to live with us we can only help her every 3rd weekend and for half of school holidays. She is very limited in her socialising.
We are going to a Families with Autism course next month, where I am pretty certain lots of what we do will get reinforced.
For example tonight she came with us to a pub quiz. She had the opportunity to invite a friend and when she was not willing to follow up a messenger text with a phone call she tried to get out of coming but we said that was not acceptable (then tried to say she had a headache so she got paracetamol). We knew the adult guests on our team were safe adults for a neurodiverse kid (two retired teachers and a mental health charity worker) and although she had her drawing pad she wasn't allowed her music or computer.
My partner involved her by appointing her to run for the team and she also was asked a couple of questions we knew she was likely to know the answer to. All our guests and the host all interacted with her over the drawing she was doing (the host works with adults who have ended up in social disadvantage for a range of reasons).
At the end of the evening we expressed our appreciation she was willing to be there.
Our biggest struggle is she is aware of somatic (physical) sensation but can't identify feelings such as anxiety. That's why she needs intervention and it's the next battle with her bio-mother. So she was a bit distressed when we got home but refused to accept this could be related to her menstrual period when I suggested it. I now track her cycle in relation to visits and can spot the hormones and their impact.
Overall we do push her to interact outside her comfort zone and before her visit is finished this holiday we will get her to do a couple of "transactons" one of which will be asking at our SPCA about summer volunteering. This is important because it helps her learn how to interact with a wide range of people.
I'm lucky though, my family of origin is full of people with neurodiverse brains so I know that if we are around my family we get support and challenge in the right mix. We have very limited contact with my partner's family because they will be too harsh with her
Thank you so much for your advice and insight into your family life also, This has really helped me to be honest I think you are so right and that we should try push our daughter a little more to come out with us more as she to will try anything to get out of any social situations, This really helps as we really did not know where to start I am going to look for some support groups now aswell even just for me and her dad to start with and take it from there. I wish you all the luck in the world for your daughter and family, it really can feel a lonely place with an autistic child so it's wonderful to have this community to help us. Thank you
Feel free to bounce ideas with me here or via private message.
My niece is in her mid 20s and although undiagnosed is almost certainly ASD. My sister has been enormously helpful about helping me understand that you start with one day at a time type goals e.g. getting kid out of room and helping with grocery shopping, rather than big picture worries.
This niece is now out living independently has a mix of part time and seasonal jobs and lives on her terms as a crazy cat lady with a very active online life. Just recently she surprised us all by volunteering to give extra help to her great uncle while his wife was in hospital
One thing to get a bit of advice (might take a lawyer's visit) is to find out how you establish enduring power of attorney early i.e. when they become legal adult. It's to help be their advocate in appointments. I've been lucky our GP respects my judgement and we middle through without legal process in place, but longer term and with specialists this could be a problem.
SD20 has me as her agent in dealing with government departments because of her ADHD and gets me to chaperone any medical care because she struggles with the speed of thinking and the remembering.
Thank you very much for your reply and advice, That is a very good point and something I will look into right away! Power of attorney, my daughter will not deal with any personal or financial issues her self so I am very grateful for that advice! Thank you for offer to PM you I am sure I might take you up on that offer lol thanks so much. All the best to your niece