Help needed Re ASD and DLA

[CamsMum2010]

Ok I will apologise in advance for the long winded post.

 

My son is now 10 years old.

From being a baby he has had problems. He was late reaching all his milestones never crawled. Once he could sit up he took great pleasure from banging his head into the wall /door. I couldnt take him out shopping as he used to scream and scream ( think it was the artifical lights) He was hyper-active, did not like eye contact and could only ever have one friend, he did not play with toys just took them apart and has had obsessive behaviour since around being 18 months old ie watching same dvd over and over and over and over.He was first excluded from nursery and then school in reception the first week he started. He has always been too truthfull does not realise about hurt feelings etc. He exhibits extreme behaviours and gets very violent with no prior warning. He only eats certain foods. Will only wear certain clothes and when he is wearing them will chew holes in the sleeves. He is also dyspraxic - ie cant do buttons even now or ride a bike even with stabilisers or catch a ball well.

 

 

When he hit five he was sent to see a consultant peadatrican who diagnosed him ADHD ODD DYSPRAXIA. His exact words were "I would diagnose him autistic however his speach is too good". So for 5 years he has taken ritalin and other drugs with no effect (ritalin caused motor and vocal tics) He attends a special needs school and is having great difficulties even here - there are too many people 6 in his class is too much to deal with and he hates the other childrens noise although he is happy to be making it. Because of these difficulties he is 10 and has to wear incontinence pads, Has very low self esteem, does not sleep is having more and more melt downs both at school and at home will not wash himself or brush his teeth just wants to sit in his room and have no dealings with anyone he was refered to CAMHS.

 

The doctor we saw here clearly said he would put his house on him having Autistic spectrum disorder and not adhd. There was a bit of fighting between his consultant and the camhs doctor but now both have agreed to a diagnosis of ASD.I receive high rate care and low rate mobility but the doctor at camhs was adament my son would qualify for high rate mobility. My son gets a taxi to school and has meltdowns on a daily basis which sometimes end up in him not going into school. He has been banned out of 15 taxis and now has one all to him self. He is handled almost daily at his special school and physically restrained. There are problems every morning and evening when it comes to the taxi. I am sporting a very deep black bruise at the moment which is what I got for trying to put him in the taxi.

 

So two questions does anyone else agree with the diagnosis of ASD or would you say he is ADHD ODD DYSPRAXIA?

 

And what are our chances of getting higher rate Mobility?

 

Also just to mention we are currently having him seen by ed psych as he still cant read or write and probably has learning difficulties dont know if this is relevant.

 

Thanks Zoe

[my-spirit-soars-free]

Have a look at this site:

 

The National Autistic Society - DLA high rate mobility: the law

 

 

Basically, it says that: You must be suffering from a physical disablement resulting in your physical condition as a whole being such that:

 

1. You are unable to walk.

2. You are virtually unable to walk.

3. The exertion required to walk would constitute a danger to your life or would be likely to lead to a serious deterioration in your health.

4. You have no legs or feet (from birth or through amputation).

5. You are both deaf and blind.

6. You are entitled to the highest rate care component and you are severely mentally impaired with extremely disruptive and dangerous behavioural problems.

 

 

 

The problem, from what I have heard, is that some decision makers have trouble realising that autism is a physical condition.

 

It is a hard decision whether to go for it, as applying to get a reassessment of your DLA can also cause a reduction in the DLA awarded, so many people are nervous of that aspect.

[Bookworm]

Difficult to comment on the ADHD side of things, as autism is not called a "spectrum" for nothing. Where does ADD/ADHD start, where does autism end? All these conditions are intimately linked and interwoven.

 

I'd be tempted to say that if none of the Ritalin etc worked, then the ADHD may be ruled out, then again it doesn't work on all ADHD kids...

 

ODD in this country is actually called PDA (Pathological Demand Avoidance) and is difficult to diagnose, as most ASD kids will have difficulties in complying with even simple instructions. Personally, I wuld trust CAMHS ahead of a paediatrician simply becaise mental health is very much their speciality, as the name indicates, and they will have seen a lot of kids like your son before. I have to say the paed comment about "I'd diagnose him autistic but his speech is too good" would send alarm bells ringing for me, as many many people on the spectrum have extremely well developped speech (in my son's case, it's getting him to shut up that's the problem, lol).

 

Having said all that, don't get too hung up on the diagnosis, as long as he is correctly identified as being on the specturm, that really is the main thing. The difficulty then lies into identifying his particular difficulties.

PDA IS importantto be identified however, as handling a PDA child is very different from handling a ASD one. An ASD child will react best to a clear instruction, no choice given, no questions asked, ie: "We are going out in 10 mns, please put your socks and shoes on", whereas a PDA child needs to be made to feel he has chosen to do so. Trying to tell a PDA child what's to be done will usually redult in a complete refusal to do so, even if doing it were easier and faster than NOT doing it, even if it results in them depriving themselves of what they really wanted in the first place. (hence the "pathological" part). So in their case, you have to coax them and make it as if they had a choice. "We need more milk, what do you think we should do?"

 

Ok, now DLA.

it is possible to get HRM for an autistic child, but it's not easy. The DWP are braking with all 4 hooves to stop the knowledge srpeading that it can be done, and will systematically fight any high-functioning claim for HRM. I am however living proof that it can be done, having secured HRM for my son last year at tribunal, and reading between the lines, I'd say your child sounds a lot more of a handful than mine.

The link to the NAS worksheet is a very good one. I used it extensively for my case.

 

I apologise to everyone, I have been meaning to post stuff to help everyone in the same situation, but my life is a bit full of hospital appointments and whatnot just now, I will do it soon, I promise, and then people can pick and choose what to use for themselves.

 

If you mean to go for it, then you want to start keeping a diary. Evety day, you record what he did which was different from what a normal 10 yo would do, including refusal to get up/go to bed, the violence, soiling himself etc... If he has a good day, then say so, if not, say it like it is. That will give the tribunal an idea of what it's really like to live with autism, not just what the textbook tell.

 

Re: the eating of sweatshirts, as well as the noise etc... It seems to me that your son has the typical autistic dual issue of hypER sensitivity and hyPO sensitivity. It means that for certain things, their senses are too dull to perceive things around, so they need to stimulate it, and chewing to excess is one of the ways to deal with it. Another one would be the stomping instead of walking as it's the only way they can feel the ground beneath their feet properly and balance.

Hypersensitivity on the other other hand is when the sense are too acutely tuned, so creatign an extreme reaction to sounds, lights, certain feels (hence the fabric issues) and so on. it's actually (here comes the science bit!) a very primitive reaction of light touch/heavy contact. Animals licking one another or a nice massage are comfortig, relaxing. Yet a light touch/tickle can send us in a real tizz. With autistic kids, it's -yet again- taken to the extreme and that is why you'll find side by side in the same child a love of being squeezed really hard and an inability to bear a light fabric against the skin. And it can happen all at once too! (just in case our lives were getting boring! )

 

You can try to distract him from the clothes chewing by getting him a chew toy kind of thing, somethign that will satisfy that need to chomp on something.

 

sorry, just re-read yourpost to make sure I had covered everything, and sorry for asking, but are you sure he said ODD and not OCD?

 

Any questions, ask away, and we'll do what we can to help.

[CamsMum2010]

Hello thank you both for your help.

Yes it is ODD and last time we went they wanted to diagnose him with conduct disorder as he has started lighting fires and tried to kill our pet rabbit. He really is a complex child. Sometimes clear commands do work but most of the time he really does need to be pursuaded to do even the simplest of tasks such as putting shoes on. CAMHS said they would back me 100 percent in getting high rate mobility. As my-spirit-soars-free said I am scared of actually losing money. I will start to keep a diary I always do this when my dla is up for renewal however i tend to focus more on the care side more than mobility. the other information you have provided is really helpful. What do I need to do then ring DLA and ask them to look at his case again? He is actually getting more and more difficult to manage i can no longer carry him when he is on *one* he is 10 and weighs 8 stone. I will go to tribunal if need be. I have read your fight for it bookworm. I already film him in action so that I can show the doctor when we go to see him. Hopefully this will help like it did you. Just such a scary process.

 

Thanks again

zoe

[CamsMum2010]

Hi just a quick up date got the review forms filled them in and sent them back about 4 weeks ago now. Got a letter saying decision could take up to 11 weeks and to ring after 8 if I had not heard anything and was concerned. Just a matter of waiting now. On another note im having a lot of trouble with people in my area. My children and I are being verbally abused in the street. I have been called ****, a social bum, a leech along with words i could not possibly type on here. People saying there is nothing wrong with my son he is just really naughty and I tell him to behave this way for the extra money. Feels like a total witch hunt. I am not even on benefits my partner works 300 miles away during the week to provide for our family but because they dont see him home suring the week im playing the system and im on benefits. Even had people saying I dont have a partner and im a single mum with 5 kids with 5 dads! I do have 5 kids with two partners but i fail to see their point. Its hard enough having an ASD kid without putting up with these petty small minded people. Had one woman who said I have worked with ASD kids and your son is clearly not, yet another neighbour told me she has never even had a job. How do i deal with this?

[Bookworm]

You do what we all do, more or less quick, with varying different levels of success: You grow a thicker skin, think "screw you" and keep on doing what's best for your family.

 

What the hell do you worry about them for? Don't you have enough on your plate without paying attention to malicious gossip? :-?

[my-spirit-soars-free]

It will pass, people will move on and find something more interesting to gossip about.

[CamsMum2010]

Quick update received letter from DLA today after asking to have decision to be looked at again. Basically have been turned down for HRM,

In the information we used bit of letter it just says information from your claim pack

On past letters they have stated they have contacted medical professionals.

I have rang CHAMS today and spoke to the guy who works with my son and he said they have never contacted him about the claim.

So whats next? Appeal? or do I ask for a written statement of details? Thanks in advance

Zoe