Mum to 8yr old son who's just been diagnosed with aspergers

For issues specific to autism / Asperger Syndrome.
Hi everyone, I'm new here. I'm looking for some answers really. we have just recently had our diagnosis through 3di assessment. To be honest I have no idea on the scores on the sheet and the ranges. I haven't been told anything about the condition at all and what I need to do next. All I was told by the consultant is that I should now claim DLA for him which I've filled out the form and sent it off but regrettedly think I have filled it out wrong and not put in enough detail but I have sent 3 supporting letters on how my son behaves. I'm devestated on the diagnosis and my son is being severely bullied at school to the extreme he tried to strangle himself. The school are not supportive at all and not communicating with me very well in regards to this and to put intervention and care plans in place. I have mixed emotions. I'm relieved I now have a diagnosis and can put the motions into place to help my son even more. I haven't stopped reading and it's driving me mad. I don't know how high on the spectrum he is as nothing has been explained to me. I don't have anyone around me or know anyone with the knowledge of aspergers and I feel like a rug has been pulled beneath me. Can any of you lovely people help me. I feel like my head is going to explode! I'm sorry for the long post but I have a million and one questions to ask and need help so that me and my boy can face the world together ... thank you for your kindness to read my post. Amy x
http://www.autism.org.uk/about/what-is/asd.aspx
http://www.autism.org.uk/about/family-l ... arers.aspx
Amy
At the bottom of the second link is the number for the Autism helpline. They will be able to advise about forms, school And much more

Try to stay calm, anything to do with autistic spectrum disorders takes a long time, and your boy may well be picking up on your anxiety

Xx MrsA
Hi Mrs A thank u so much for your kind reply. I will be phoning them as soon as they're available. I appreciate this so much thank you
Hi Amy,

Diagnosis was a horrible time for us. We'd fought and fought because I thought that getting diagnosed would mean everything would change and it would all get better. We had the same as you - someone said "He's autistic" and that was it!

I would second Mrs A's suggestion to contact The Autistic Society for help and advice regarding all the areas of difficulty you've mentioned. You might get turned down for DLA; it's upsetting but not unusual so it would be worth taking advice on getting a reconsideration of the decision but that will be at a later stage. There are often support groups for families with children on the autistic spectrum and again the Autistic Society have a list of local groups so there might be one in your area that you can get along to. It's also worth looking on Facebook if you use that for groups in your area; the relief of finding you're not the only one is huge!

I remember reading everything in sight! It's a horribly stressful time but I think everyone goes through it, unfortunately. There were two books that I found particularly helpful:

https://www.bookdepository.com/Out-Sync ... 0399532719

http://www.jkp.com/uk/sensory-perceptua ... drome.html

Sensory problems are very common in people on the autistic spectrum, wherever they are in severity, and both of those books I found explained the sensory issues and the way the sensory nervous system affects our ability to function in day to day life. The first one has lots of games and activities that are easy to do at home for the most part so there might be something in there that you find rings a bell when you read it and that you can do at home that will help a bit. The second one is quite heavy going and more indepth but I found it was a real 'light bulb' moment for me and helped me understand how difficult everything was for my son and why. It is a very tough time for both of you and the lack of support that is still very obvious disgusts me; we went through this ten years ago and the fact that nothing's changed despite the fact I know there have been endless campaigns, much lobbying of government and literally thousands of parents working their socks of to raise awareness is completely unacceptable but is still the reality, unfortunately. You're not alone, though, there are lots of us about and we do all get through it in the end.

In terms of what to do next (and I am constantly at that stage myself), I find it helps to ask myself what the most important thing is at the moment - whether it's sorting out the school situation, helping him manage certain aspects of his condition that trouble him the most, financial help etc. Personally I've found attacking the biggest problem first helped me because it would then either (a) sort out some of the smaller problems along the way or (b) show me that the cause of that problem wasn't what I originally thought and so it changed the way I dealt with it. It's a rocky path and I do feel for you but you do eventually get to a point where it all starts to make sense and things settle down.
Thank you mumwhocares, I'm going to get in touch with the society and my local council on Monday to see what's available in my area. Thank you so much and it's kinda refreshing to hear that we will both get through this. I haven't told my son about his diagnosis because 1) I don't know how and 2) I don't know how he's going to react. The school said he needs to know but I'm not so sure??
Amy x
amy_1606 wrote:Thank you mumwhocares, I'm going to get in touch with the society and my local council on Monday to see what's available in my area. Thank you so much and it's kinda refreshing to hear that we will both get through this. I haven't told my son about his diagnosis because 1) I don't know how and 2) I don't know how he's going to react. The school said he needs to know but I'm not so sure??
Amy x
To be honest the school sound as if they're failing him massively, I think it's them that need to 'know' about his diagnosis and I wouldn't be taking advice from them as they don't sound very supportive! I think it's different for everyone. My son refuses to accept he has any health problems at all, probably because he has no idea he's different to anyone else so he thinks I'm talking nonsense. For some kids/adults it's a relief because it gives them a reason for the things that have been happening, for others it's a real problem and it takes a long time to get used to. You know your son best so don't let anyone push you if you have a feeling it's not the right thing to do (you will get used to having to fight your corner when everyone else is telling you you're doing it wrong!). Personally I would wait until you feel comfortable; get some advice on the schooling issues (not from the school!), talk things through with people in your local area and/or the Autistic Society helpline (and they probably have some resources to help explain Asperger's for when you do decide it's time) and wait until you feel you can explain things clearly to him and cope with his reaction to them (I know of some kids who've not been the slightest bit fussed, it's funny how hard it is to know in advance what they'll do!). I think some kids react better if they're drip fed the information over a period of time and things are discussed just when the opportunity comes up, they're all different. I'm fairly sure there are some kid's books about having autism; again the Autistic Society will be able to do advise you on that.

I also just wanted to say that it's very easy to become overwhelmed with all this new stuff to deal with. Don't forget to just do mum and son fun stuff as well; just watching a silly film or going to the seaside or whatever it is your boy likes to do, it's very easy to get bogged down in it all and the autism takes over (speaking from experience!). It's important to just go and have a good time and stuff yourselves silly with ice cream every now and again :) x
Thank u so much... I am looking into moving schools as I feel he's not safe on that school and they are useless! We've had plenty of cuddles and movies which he loves. I feel so bad for him. I've always known something wasn't right but just couldn't put my finger on it. Now we have the diagnosis I have mixed emotions I'm relieved as now we can get the best help available but also I'm guilty that some things I've just put down to him being whiny. Now I feel like I can make the excuses for him without people thinking that he's just a cry baby. I've got this new sense of protection for him but to me he's still the same little boy I love but I've got a lot of fighting with that school as they're useless and to also get him out of there.
amy_1606 wrote:Thank u so much... I am looking into moving schools as I feel he's not safe on that school and they are useless! We've had plenty of cuddles and movies which he loves. I feel so bad for him. I've always known something wasn't right but just couldn't put my finger on it. Now we have the diagnosis I have mixed emotions I'm relieved as now we can get the best help available but also I'm guilty that some things I've just put down to him being whiny. Now I feel like I can make the excuses for him without people thinking that he's just a cry baby. I've got this new sense of protection for him but to me he's still the same little boy I love but I've got a lot of fighting with that school as they're useless and to also get him out of there.
Amy, I think most parents will tell you that they've assumed their child is whiny/lazy/naughty etc and then found out they have some sort of disorder. I know there are things that I did/felt when my son was younger that horrify me now but I had no idea he had problems and I assumed he was refusing to do things instead of being unable to. I think that's one of the reasons getting a diagnosis is such an important step; it is hard to know how to handle a situation when you don't know the cause of the problem.

Re the school situation, could I suggest that you contact Ipsea first? I don't know if your lad already has a Statement/EHCP in place? But if he hasn't it might be worth sorting that out; it's all very complicated and I'm a bit out of touch with that sort of thing now but I would suggest having a chat with them before you change schools just to make sure it isn't an out of the frying pan, into the fire situation. With hindsight I have found that having as much knowledge and information as possible before doing or saying anything to anyone else helps; unfortunately many of us have found that public sector workers don't always give out the correct information or work with your child's best interests at the forefront of their mind so I'd get some good advice re schooling first before trying to do anything else about that. It's a difficult time but you will get through it and it does get easier to get your head around it all as time goes on. x

https://www.ipsea.org.uk/