Aspergers/ASD support thread

purplewombat

Hi

We finally got the report through from CAMHS with the official diagnosis on it this morning and now I'm even more confused! When we went for the final appointment where they told us all their findings we were told that his diagnosis is Pervasive developmental disorder not otherwise specified which is on the autistic spectrum. However on the report it says that it only falls under an ASD diagnosis for the purpose of the educational setting. Does that mean that he is or isnt on the spectrum??

We were also told that the report would specify what his needs in school would be, e.g. that he would do better in a smaller group, would benefit from one to one help, but there is nothing about this at all and now I'm worried that he wont get this help.
I'm guessing that this report isn't the statement and that this will come from the LEA or something? But if theres nothing on the report about what his needs are will he even get a statement, and if he does will it have what he needs on it? I'm not even sure that I can speak to the people at CAMHS about it as we were told that their involvement in it is all finished and his file with them is closed.

I'm just really frustrated with it all, it took so long to get to this point -over 2 years to get the diagnosis- and I thought that once we had that it would be all done, he would get the extra help he needs. Now it seems like theres another huge hurdle to deal with.

Snaggles

Purplewombat, I really feel for you, because I feel like this is exactly where we are heading too. I'm not sure what to suggest - hopefully one of the more experienced posters will be along soon, but just wanted to send you a (((hug))), and say try not to panic, because we will get there eventually, it just might be more of an uphill battle that we first imagined. But as Duchy's sig says, 'I would rather climb a mountain than crawl into a hole'.

Zara33

Purplewombat:

It means that he is on the spectrum.

This report is not a statement as you rightly guessed it does have to come from the LEA.

MyUserNamesTaken

To get a statement, either you or your child's school must request a statutory assessment be carried out by the LEA. Talk to your school about requesting statutory assessment. If the school won't do it, request the parental request form from the LEA and ask for it yourself. Getting a statement will be a real struggle, as LEA are under pressure to turn down something daft like 97% of all cases (regardless of circumstances). That's where SENDisT (Special Educational Needs and Disability Tribunal) comes in. You then appeal to SENDisT to make the LEA carry out a statutory assessment. If you don't get a statement out of the statutory assessment, you can appeal to SENDisT again. Unfortunately, getting a diagnosis does not guarantee you a statement. It took me 5 and a half years from my son being diagnosed to him getting a statement.

http://www.sendist.gov.uk/

purplewombat

It was the school that refered him to CAHMS so I assumed that the statement would come as part of all that. I was planning to ring up and speak to the headteacher and the SEN guy after the holidays, so they should be able to tell me whether or not they've requested it. I can't see them not doing but its good to know that if they don't I can. I'm shocked that its so difficult to get one, if the child needs a statement to help with their educational needs then there should be no question about that child having one imho.

Carrera74

My son's school applied for the statement and we were successful. I was warned that it would be difficult to get but it wasn't. I know that it is different in each area so maybe we struck lucky. He certainly wouldn't still be in mainstream if he didn't have his extra support. School think he needs more so we'll be having an early review later this month.

It could be that the LEA have requested the report from CAMHS as part of the statement process? Although you would have had a letter from them asking you for your opinion too with a copy to the different people involved (such as CAMHS, SENCO etc).

Ring your school as soon as you can. It's all very complicated isn't it!

MyUserNamesTaken

purplewombat wrote: »

It was the school that refered him to CAHMS so I assumed that the statement would come as part of all that. I was planning to ring up and speak to the headteacher and the SEN guy after the holidays, so they should be able to tell me whether or not they've requested it. I can't see them not doing but its good to know that if they don't I can. I'm shocked that its so difficult to get one, if the child needs a statement to help with their educational needs then there should be no question about that child having one imho.

If the LEA was carrying out a Statutory Assessment, you'd know about it. They would have written to you to tell you and ask you to give your views ("Parental Advice"). Like I said earlier, diagnosis and statement don't go hand in hand. You'd think they would, but it's not the case. Some people are lucky enough to get a statement without a diagnosis. Some people have the diagnosis, but no statement. They are, however, two separate issues - two different hurdles to jump. You can apply for statutory assessment without a diagnosis.

It is shocking to know how hard it is to get a statement (and Carrera sounds like she was very lucky indeed), but it's all down to money at the end of the day. It shouldn't be a question of money..it should be about the child's needs. LEAs shouldn't make the lives of disabled kids and their families any harder by making them fight for their rights, but they do. The LEAs will normally turn down an application for statutory assessment with the intention of doing the assessment if the parents then put in for tribunal via SENDisT. My LEA did this with me, by the way - they backed down when they were informed by SENDisT that I was taking them to tribunal. Apparently, it's to do with whether the families are willing to fight. The idea being reject all applications...allow those who then put in for appeal, as they are willing to fight for it. Those who have no idea how the system works, or are too emotionally exhausted to fight anymore fall by the wayside and don't get the help they need. To give you an example: my son was turned down back in March, even though he's been on Record of Support level 3, which then became School Action + all his school life. The targets on his IEPs were never achieved in the whole time he was on SA+, and he was receiving no outside help (which you're supposed to get when on SA+). The reasons given for turning him down was that he was doing fine and was progressing, thus did not require a statutory assessment of special needs (they'd asked his school, etc). I appealed, they backed down and assessed him. He was given his statement in October...25 hours of LSA required, plus other things. So, they went from saying he didn't need any extra help to giving him almost constant supervision in the space of 7 months.


Sound cynical? Not really...speaking from experience of the system.

ACE is another very good sorce of information and help, as is IPSEA:

http://www.ace-ed.org.uk/about/index.html


http://www.ipsea.org.uk/

blue_monkey_2

Hi Purplewombat, how very confusing for you - worse because school is out (is anyone else counting days?? I am on hours, LOL) and you can't follow up. Fingers crossed that the school will get it sorted for you - they sound on the ball, if they wanted to 'ignore it' then they could have but as they are the one that instigated it then that is a good sign I would have thought. Let us know what they say won't you.

Hope everyone is having a good day. I hear the snow is coming tomorrow (a little or a lot? We are not sure) the kids are so excited, they get all excited about it and only do 5 minutes before they are in crying as they are cold, LOL. I remember the days of playing in the snow, coming in with wet soggy gloves and warmng them on the fireguad, ready to get out there again. And the smell of the wet wollen gloves that are soaked with snow and then warming up and steaming by the fire. Ahhhh, those were the days that it really did snow!

I've had an especially long day today - just consolling myself with chocolates (yes I know I was supposed to be shifting the 4 pounds I have put back on, I feel urgh! tomorrow is another day and now I feel sick.

Does anyone else have trouble with affection from their kids? Ryan pushes me away a lot, tonight was another night, could not even get near him, he hit me in the face and told me to go away again (I wear glasses, maybe it's time to switch to contacts these days, they cost more though). Some times it is hard. Espcially when you give up everything to look after them only to be jumped on, hit, kicked and then shouted at, he tells me he hates me almost every day, I am sad to say that some days I wonder what on earth I am doing and whether this is my fault

Still, tomorrows another day, I am not going to let it get me down today.

blue_monkey_2

Oh, someone told me about Dore which is help without drugs and they give all these testimonies on the site, so I had a look last night when i had 5 minutes and I had to take this test to find out whether ryan had ADHD. So i entered all the bits I needed to and it came up with all of the symptoms but to find out more I needed to sign up to their 'course' - and all for £74.04p a MONTH!! What a croc of s!!! So if you are thinking of looking the site up then don't bother and save your time in signing up. I left my telephone number as they asked for it so I hope I don;t get calls left right and centre from them!!

shazrobo

blue monkey (((((big hugs))))) your not alone at all when it comes to your son hitting you. daniel is the worst out of my two, and its not just me, at 6 years old he had a go at a teacher who endeed up unconscious, at the age of nine he was trying to strangle me, and luckily my dad was there and he rang the police, daniel is a big lad by the way, he's 12 years old now and massive very broad, almost 6 foot tall, and today he has had a go at me again, sometimes i'm so frightened off him, as is his twin brother, sometimes i feel like i cant love him any more its got so bad, that in my darkest moments ive thought how easy it would be if he was in care