SkyBlue Report post Posted April 5, 2006 Hello there, I thought I would introduce myself! I hope you're all well The reason I have joined now is because i need some information, i know this is a bit much first post and all, but I thought this was the best place to come for some accurate information. I am currently a student and I am writing a report on autism, I was wondering if any parents of ASD children would mind filling out a quick questionnaire for me? The only stipulation is that your child has to have been diagnosed with ASD about one year ago - i am going to compare the aid families get now compared to the aid they got when a child was diagnosed with ASD ten years ago. It is not very long and requires no personal details so it is completely annonymous - i don't even need to know your name or your child's name! I know you don't know me at all, but there is nothing sinister about this at all, i'm just trying to get some research done, and i figured coming on here would be the best way to do it. If anyone wouldn't mind helping me out, if you could PM me and i'll PM you the questionnaire - I don't even need your email address! I'd really appreciate any help anyone could offer me. Thanks to you all, i look forward in joining in many discussions with you, i promise not all my posts will contain requests! SkyBlue Quote Share this post Link to post Share on other sites
phasmid Report post Posted April 5, 2006 Hi Skyblue, I'm afraid I don't fit your criteria so can't help on that score. But welcome to the forum, I am sure that others will be able to assist you with your research. I am currently writing up my own dissertation (Hi Annie - yes I know but peeps keep pm'ing me!) on SEN and inclusion. If I can help let me know. Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 5, 2006 hi phasmid, thanks for your reply, i appreciate that offer! Obviously the same applies to you. I am writing about policy, well rather the lack of it! I hope your work is going well, good luck with it! SkyBlue Quote Share this post Link to post Share on other sites
Tylers-mum Report post Posted April 5, 2006 Sorry skyblue. My son was only diagnosed in Nov '05 so not quite what you are looking for but I'm sure others will be along soon and only to pleased to help you out. All the very best with your course and your report. Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted April 5, 2006 My son was dx in 2003,so I fall outside your criteria but welcome!!!xx Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 5, 2006 (edited) Thank you very much Tyler's mum & CarerQuie - everyone seems so friendly here it really is refreshing! I suppose I really should have told you a little bit more about myself in my first post! So let me make ammends now: My name is Niki, I was inspired to write a dissertation on ASD because my boyfriends younger brother is autistic. I have watched this child grow into a delightful young man over the years, but have also seen the struggles too. Scott was diagnosed ten years ago, when he was 8. His parents were given extremely little help or support, which i found disturbing. In writing my report I am aiming to establish whether as information and understanding has grown regarding autism, has the support and help offered by social services/LEA's/Local councils/Disability benefits etc grown in accordance? This is the reason I am looking for a family who was diagnosed approximately a year ago - although it could be slightly more or less, and attempting to compare the help they have received, compared to the help Scott's family received years ago. I hope that gives people a little more insight into me and my world! Any qu's? Feel free to ask away Edited April 5, 2006 by SkyBlue Quote Share this post Link to post Share on other sites
Tylers-mum Report post Posted April 5, 2006 You sound like a lovely lady too. I have the answer for you without you having to do reasearch. LOL (I know you have to back findings up! ) but the simple answer to your question is 'No!!!'. Every parent here will tell you that we all have to FIGHT to get the most simpliest of things for our kids. Nothing is handed to us on silver plates. If only the world was that understanding and easy!! Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 5, 2006 Hehe thanks! Lol, yep I know the answer before i even write the thing!! It would be a lot easier for me if I could just put "NO - The End", but unfortunately i can't!! This is the reason I think this paper needs to be written - parents of ASD children simply do not get enough help or support, and something needs to be done about it. Whilst I am completely aware that writing my university dissertation isn't exactly a movement of any substantial size (!) it is however a start! And I guess even the Suffragettes needed a start!! The fact that autism isn't visable is not an adaquate excuse in my book, and with the percentage of people ASD affects in the UK and across the world, lack of understanding is also no longer acceptable. I think having seen first hand the struggles families have with gaining access to services etc, I am really compelled to write this study, so hopefully it'll be a good'un! Cheers, Niki Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted April 5, 2006 Hi Niki, Welcome to the forum. My son Martin was diagnosed in June 2005 so that will just about fit in with your criteria. If it does PM me the questionnaire and I'll do my best to fill it in. Quote Share this post Link to post Share on other sites
Suze Report post Posted April 5, 2006 ........hi Niki.......Tylers mums correct......the answer is NO! .................Love to helpyou but sadly we got a dx 3 yrs ago. Quote Share this post Link to post Share on other sites
pingu Report post Posted April 5, 2006 Hi niki. first of all welcome <'> Im not sure we meet the criterea either, Our little spud was Dx with ASD in august 2004. But if that is anyhelp let me know and i will gladly fill out the questionairre. (sorry about the spelling, having a really terrible day and my fingers wont wake up in accordance with my brain) I must say though that i agree with the comments so far, We were told initially that the support would be there, but up to now we are still fighting for his needs to be catered for properly, although certain members of his school are bending over backwards to help, i have a feeling that other members are putting a brick wall in their path !! Good luck with your findings. I hope you will go on to scream our views from the rooftops Shaz Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 5, 2006 Haha thank you all so much - Daisy, Pingu and Suze I am thoroughly looking forward to being a member of this community! I do hope I can make a difference, however small - we shall see hey! And Shaz, I shall scream and holler as loud as seems to be needed! Quote Share this post Link to post Share on other sites
redberry Report post Posted April 5, 2006 We are not what you are looking for either. My boy S dx in Feb this year. But hey ! anyway and welcome too redberry Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 5, 2006 Thanks very much redberry Looking forward to getting to know you all! Quote Share this post Link to post Share on other sites
jen Report post Posted April 5, 2006 We had a pole on here for information that was given to parents on diagnosis. Maybe you could use this information and turn the question round by saying in 2006 these are the results on people diagnosed with ASD. However the incidence of ASD is rising and it is goverment policy to aim for children to be included etc etc. Looking at diagnosis 10 years ago the number of people given additional information was.............. You could also look at the number of people going to tribunal. There have been several people who have killed there autistic child because they could not cope. You could use your sons family as a basis for 10 years ago and use the people on the forum for a later diagnosis. Jen Quote Share this post Link to post Share on other sites
Kathryn Report post Posted April 5, 2006 Hi SkyBlue, and welcome My child was diagnosed two years ago - it's probably too far outside your timespan - if not, let me know. Good luck with the research, Kathryn. Quote Share this post Link to post Share on other sites
lancelot Report post Posted April 5, 2006 Hi SkyBlue (hmm, sure I used to get a magazine called that), My son's diagnosis (Asperger's and OCD) was January 2004, so probably too long ago (though, hey, we've only just had the first follow-up appt, so clearly the NHS doesn't think two years is very long!). Happy to help if it's any use to you. All the best, L Quote Share this post Link to post Share on other sites
lancelot Report post Posted April 5, 2006 Hi SkyBlue (hmm, sure I used to get a magazine called that), My son's diagnosis (Asperger's and OCD) was January 2004, so probably too long ago (though, hey, we've only just had the first follow-up appt, so clearly the NHS doesn't think two years is very long!). Happy to help if it's any use to you. All the best, L Quote Share this post Link to post Share on other sites
lil_me Report post Posted April 5, 2006 Hello & welcome, my son was 'suggested' as having ASD by the CP who was assessing him in July 2005 but we didn't get the complete dx until September 2005. If this falls into your criteria happy to help, regadless best of luck with it Quote Share this post Link to post Share on other sites
asereht Report post Posted April 5, 2006 (edited) Hi Skyblue. I live in Ireland and my son got formal dx in jan 2005,but it was mentioned to us the june before that he may have AS.So don't think I would be of any help to you,but if I can help at all let me know. Edited April 5, 2006 by asereht Quote Share this post Link to post Share on other sites
helenl53 Report post Posted April 5, 2006 Skyblue - you must stick with this. We are seen as anxious and neurotic and so the more people who are writing objective material and who are not parents - the better for us. We had DX i July 2004 so I think I am out of time. HelenL Quote Share this post Link to post Share on other sites
elainem Report post Posted April 6, 2006 Hi Skyblue, think we might fit your requirements - dx May 05 - is that close enough? Feel free to pm the questionnaire if so. Elaine Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 6, 2006 Thanks to you all, you're all so kind Jen there were some really good ideas in that post - especially the part about some people killing their autistic children because they couldn't cope - i'll be completely honest and admit I didn't know this had occurred. That is disgraceful and so tragic, I will definately be including references to this in my report so thanks a million for that. It really backs up my arguement that parents NEED more support. Cheers. Lil me and Elaine I will PM you my questionnaire - really appreciate your offers to help! Kathryn, Lancelot, ashereht and Helen - thanks very much for offering to help but I think you do fall outside of the timespan criteria, thank you nonetheless though! Lancelot - don't know about any magazine calle SkyBlue but i'm a SkyBlue because I'm from SkyBlue city - Coventry! Lucky me eh!! Thank you for your message of support about my research Helen - I am hoping that as I do not have children who have ASD I cannot be seen as being biased, and also the fact that I have seen the affects autism has on a family through my partners brother should mean that people acknowledge that I know what I am talking about...we shall see hey! I am hoping to help. Cheers everyone, Niki Quote Share this post Link to post Share on other sites
tmf Report post Posted April 6, 2006 Hi Niki and welcome <'> My son was pre dx in june '05 and formally dx aug '05. If this falls into your criteria feel free to pm the questionairre.....always happy to help! Good luck with your quest.... Quote Share this post Link to post Share on other sites
Malika Report post Posted April 6, 2006 Hi SkyBlue, My son was DX with ASD (final report) in october 2004 if it is OK send me a PM with you questionnaire I will send the answer to you. i did not receive any help and it is a fight for everything i get for him. Malika. Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 6, 2006 Hi Malika, thanks for offering to help. Unfortunately I think that is a bit long ago for me to include you in this particular part of my report - however I will certainly be making the point that parents of ASD children certainly do have to fight for everything they receive, which I feel, as i'm sure most people do, it extremely unfair, especially considering the strain already on families such as yours. I am sorry to hear you have such a difficult time receiving what should be freely offered to you and other ASD affected parents alike. I can only say I hope I can make a difference to families in the future in some way. Thank you once again for offering to help, and i'll look forward to chatting to you on here! Take care, Niki Quote Share this post Link to post Share on other sites
SkyBlue Report post Posted April 6, 2006 Whilst i'm at it, can I just say a massive thank you to all of you who have filled out the questionnaire and got it back to me - you have all been so welcoming and more helpful than I ever could have hoped for! A big thank you to all of you! Take care everyone, Niki Quote Share this post Link to post Share on other sites
Two naughty children! Report post Posted April 6, 2006 Hello, new to this myself, but my daughter was diagnosed in June '05 so if I can help PM you questionnaire and anything else you would like to know Quote Share this post Link to post Share on other sites
Nemesis Report post Posted April 6, 2006 Hi Niki, My son was dxed last December - so perhaps too recent for your purposes but pm me if I can help. Helen. Quote Share this post Link to post Share on other sites
