diagnosed but no help

Hi Jess7,

I've edited your post because we don't allow research requests on the community (point 6 in the rules: community.autism.org.uk/rules). This is to make sure that all research has gone through the proper ethical approval process. If you want to use the NAS to find research participants please follow the process on our website:

www.autism.org.uk/.../requests-for-research-and-participation.aspx

The NAS helpline can support parents, carers and people with autism about all sorts of issues, including how to make complaints about professionals, and how to make your case so that you are listened to. It is open Monday to Friday, 10am-4pm and the number is 0808 800 4104. You can also email the helpline using their web form, here: www.autism.org.uk/.../Helpline-enquiry-service.aspx

Thanks,

philippab - mod

Hello, I'm a student currently studying Special Needs and Inclusion Studies and also a sibling of someone with a diagnosis of Autism and Dyspraxia and Dyslexia and numerous other things. I found it very interesting and disturbing that you were pointed at as neglecting your son because my parents were also blamed for saying my brother didn't have correctly fitted shoes and needed glasses and my parents were too overprotective, I'm currently wishing to do some research on parents and how they feel they are treated by proffessionals and whether they felt blamed in any way and what you have said here is extremely shocking but relevant information. If you are willing to I would like to ask if you would mind emailing me with some information about your experience going through the diagnosis of your son? I'm not asking for any personal information, just maybe a short email about your experience. I also understand the private nature and I would like you to know all information you give will be handled with care and not shared without your permission which I would ask for before using any. 

[Personal contact information removed by philippab - mod]

Any other parents who have any experiences similar to this or any experiences where professionals have tried to blame you or made you feel helpless please contact me.

Thank you.

Thankyou for your thoughts. I have always known something was wrong with my son. this is going to sound shocking but I was investigated as neglecting him for a year as no one would accept my notion that he was startved of oxygen at birth and I was sure he had autism. Anyways a few years later aged 6 and we were given the diagnosis that yes it was autism causing him to act like he was not neglect, but as a self forfilling prophecy I still wonder if its something I have done. He has severe autism which I believe is called low functioning? He has serious communication problems, his social awareness is nill and his obsessions are off the scale. He hs been held back a year at school but they are struggling to cope with his reactions ie to change in seating possitions. He can not join in normal activites and I feel so sorry for him, other times I wonder how the hell I am going to do this evey day of my life. As im sure you all know, he can not display any affection or even look at me, yet he becomes obssessed with anyone who mentions his obsession of BATMAN. there is a man in a flat next to us who im pretty sure is grooming my son (asked him to call him uncle steve...we donrt even know him' invites him in to play batman and gave him sweets in the shape of penis') i have told police etc but nothing they will or can do. It just shows how vunerable children with autism are.

My daughter has just been diagnosed with ASD/Aspergers earlier this month. I suspected this for quite a while, though nobody ever suggested to me that this was the problem, just Mum trying to play detective. I felt at first that we had just been floated out like a boat without a rudder. But no! Sent away with reading material only I believe that this is the answer. No one knows our child like we do, they are all extraordinary individuals, each has their own unique qualities, good and bad, as have we all.

My daughter is 16. I always thought that she may stay close to home, but no! She has dreams and aspirations. Convinced that she must go to University to reach her goals. Academically she is doing very well but she has sensory problems, communication problems and trying to cook has proven comical! This usually involves fire, smoke detectors going off and my daughter running around shouting and looking for a stick whilst the fire is left unattended.

We all have to find our own way of coping and teaching as far as we can techniques to help those we care for. Some things will work, some will not. But at least this site lets us know that we do not walk alone on this journey. 

Diagnosis has itself helped my daughter a lot. Things that she found confusing that could lead to a melt-down in the past she will now say "Aspie moment!". But what works within the home environment does not necessarily work elsewhere and I have many fears for the future. 

hi dinkycd - welcome.  Rather than write a massive post on how to handle things + where to get advice about getting a statement to help with educating your child, can I recommend the home page of the nas site under Living with Autism which goes into detail?  Apologies if you've already checked this out but as you say you don't know where to turn or who to talk to I've made a presumption here - sorry if I'm mistaken.  This site, inc the posts is v helpful + supportive so you've found people who really understand.  It's a steep learning curve.  Getting the diagnosis takes time to adjust to - there are lots of posts on here about that.   You can't do it all at once so cut yourself some slack.  Can you tell us a bit about your child + any questions you have so that posters can help?  bw