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
Hi Lacey,
I am really sorry to hear you have had such a terrible time of it all. Practical advice I would offer is:
The first thing to do would be to educate yourself on Autism; looking through all the information on this site would be a great place to start. I would also recommend reading any books by Tony Attwood- get them out of the library if money is tight. One of the best things you can do for your daughter right now is learn everything you can about Asperger’s. The more you understand about Autism, the more you can help her.
Get in touch with your Local Authorities ASD Co-Coordinator, who may be able to help you access other services. I believe there is allegedly a process upon receiving a diagnosis- you are supposed to meet with the diagnosing team for a post-follow up appointment where you can discuss with them what services are now available for your daughter after her diagnosis, for example whether she will need an EHC Plan, or Speech and Language Therapy etc. I have said allegedly because, in my experience, the reality families usually face is that they are given a diagnosis (bombshell) and then sent on their way, entirely alone and unsupported. Sadly, I am increasingly forced to believe that there are no ‘follow up, post-diagnosis’ services, particularly for high functioning teens.
However, in light of the fact there is a critical lack of statutory ‘follow up’ services for high functioning young people on the spectrum, get in touch with any Autism charities in your local area. Different charities offer different services; some may have Parent Support Workers who can support and advise you as a family during this difficult time, and some may offer Teen or Family services, such as Social Groups which you and your daughter may feel able to attend, alone or together. The more you make connections with like-minded others who are living with Autism too, such as meeting other parents and young people in the same situation as yourselves, the less likely you will be to become isolated and alone as a family. Local Autism Charities will also have a good idea of what services are available in your area, and may also help you consider whether to apply for Disability Benefits too.
Best of luck.
Thank you very much angeldust this has been most helpful, I am happy to say the doctor who diagnosed my daughter did say we would receive a follow up appointment within 6weeks so we could discuss any issues we had, as the day of diagnosing can be a hard day to take in! Every word you said I feel it is so truthful and mostly worry about becoming alone as a family, we tend not to go out much as a family because we know how our daughter will react and we have to end up going home because she just has to much anxiety being out, and it really is not fair on our other 3 children missing out on everything! I am going to look for support groups or any kind of ASD group in my area and learn as much as we possibly can. I will not lie it was a relief to be told our daughter had Asperger's just because we know knew we was right and something as been bothering her for all these years bless her, and you know the day after our daughter was told she was the happiest we seen her in years!! I think she to had a weight lifted from her and understood it is not her thought she has all these problems and she is not causing problems deliberately, unfortunately her good mood did not last very long and she has now gone back into her own world as we call it, not wanting to spend time with us or anyone and spend her time alone! That is why I feel so angry at CAMHS she really dose need mental support! I can't thank you enough for taking the time to offer us your support it means so much and we appreciate it greatly, we feel so much better knowing we have the support from everyone here at this site! Thank you