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Here are some suggested organisations that offer expert advice on special needs.

Anyone know about grades of autism?

97 replies

LoveBuckets · 10/04/2009 20:08

Just wondered, heard someone referred to as having Grade 1 autism recently and was too chicken to ask what it meant.

OP posts:
amber32002 · 17/04/2009 07:29

I sometimes wonder if it's a bit like those children's puzzle games you get where there are nine squares you have to move around in a little jigsaw-like thingy to make a picture.

I suspect our brains are a bit like that, but in 3-D.

Maybe as our brains develop over time, so different bits end up moving and connecting to other bits and all of a sudden stuff works. Or doesn't any more/not as effectively (they're just starting to look at that aspect now they're identifying more older people with an ASD).

So maybe that's why different abilities just aren't there at all for years and years, (or so it seems), then one day they connect up and we're able to do stuff we couldn't do before?

Something clearly happened in mine when I was ten and realised for the first time that I was a person. And arguably again when I hit my early 20s and went from almost-nonverbal (could never think how to phrase things fast enough or understand the conversations fast enough) to 'can't shut her up if she knows the topic well enough'

But I think our brains are dodgily wired, even when they reconnect bits. I know that if I'm tired/stressed/have pushed myself too far, I'm back to not being able to talk properly.

Really intriguing.

sphil · 17/04/2009 22:48

MrsTurnip - have you emailed me? Nothing has arrived if so... Would love to hear about DW.

saintlydamemrsturnip · 17/04/2009 22:50

oh bollocks forgot hang on!

saintlydamemrsturnip · 17/04/2009 22:52

Emailed! Sorry, easter holidays - am being hopeless.

sphil · 17/04/2009 23:12

Don't worry - only just come back from camping,so wouldn't have read it til now anyway.

daisy5678 · 17/04/2009 23:26

The grading thing is so complicated. J is diagnosed with autism and the psychiatrist has always been very reluctant to specify where he is on the spectrum as she says, rightly, that it's hard to classify some people rigidly. When pressed, she has said that he has autism which severely impairs him and that he is very severe in some ways but not in others.

He's the most severe in terms of behaviour in our area, according to some professionals, but then he's academically pretty able and can access mainstream stuff with 1:1/ 2:1 support, not always perfectly, but he can access stuff, so he's quite lucky. But I can't imagine him ever not needing 1:1 - he runs, escapes, bites, kicks, headbutts, scratches, spits...he's like a wild animal at times and doesn't really have any concept of danger.

I assume he's HFA. The psych said he didn't have Aspergers as he's too severe even though he had no real language delay.

My sister has just been diagnosed with Aspergers and I'm sad to say it's caused a real rift between us as she's now constantly like 'look, I'm autistic too. I can't help being rude and expecting all of you to tidy my house for me. You don't mind when J is rude. I'm autistic too. It's not fair that J gets so much help from Social Services. I don't. Why does he get that much DLA? I don't."

I keep trying to explain that it's not about the label, but the needs, and that J is much more severe than she is and that's why he gets the support that he gets and that she should not see her new label as reason to limit herself. She got a very borderline dx and she really is not affected in the same way that J is and I'm ashamed to say that I really resent her for comparing herself to J .

She went to uni unsupported, lives alone with an hour of help a week with bills and stuff from a social worker and has a job working with kids. She's always suffered from depression but has always been extremely sociable, if very black and white in terms of her friendships.

I actually find her constant comparisons very insulting given how much autism impacts on J's life and I keep reminding her that it is a spectrum and that she is lucky to be only mildly affected. Yes, maybe she finds life stressful, but that in no way compares to what J copes with - bright enough to know that he is very different from his peers but unable to break himself out of his rituals and rages. She lives independently, managed school largely independently and has a job. She is so lucky but can't see it.

She's really taken on the mantle of autism and is constantly saying things like, "we feel things differently to you" or "our brains can't cope with emotions"...I hate hate hate those generalisations of autism: "WE" ot "THEY" do this or that, because how can you generalise someone else's experience from your own? If all the children with autism from families on this site were put together, there'd be loads of similarities but so many differences too. It runs in my family and every single person is different.

It is a total spectrum and my sister is mildly affected compared to J who is mildly affected compared to some in most areas but severe in others...I think it's so so hard to classify.

Sorry for ranting but have just spent a week with her and found the constant 'yes, he's doing that because he's stressed but I'm stressed too because we find airports very stressful' very frustrating because she's then jumping to 'I need as much DLA as him' and it's sooooo annoying. I am a bad person and sister I know but it feels like she's making a point constantly and I have enough to deal with without justifying J's DLA!

amber32002 · 18/04/2009 08:35

givemesleeporgivemechocolate, it is a wide spectrum, yes. We hear a lot about severe and mild, but there's a lot of ground in the middle.

As someone who got a diagnosis way, way into the "good grief, yes" rather than borderline bit, I know that I certainly do use "we" to describe many of the things that seem to affect both me and those I know who have classic autism. The challenge is that people often do think that Asperger syndrome is mild. I have that particular diagnosis only because my parents died ages ago so we couldn't ask anyone exactly what my speech was like as a young child. We only know that I memorised lots of long words, not whether I had a clue what they meant. Arguably the correct diagnosis could be HFA.

I didn't become aware that I was a person until I was 10. I had (and have) repetitive behaviours and obsessions. I certainly 'managed' mainstream school, in that I went there every day - but it was a living hell every day, and I was bullied relentlessly for year after year in every break, which left me with a terrible fear of people for many years. Girls don't often run and fight - we internalise it and 'shut down', which looks like it's mild and we're being well behaved and coping.

I struggled to do more than parrot most answers in my written works because I could only visualise things, not read them or calculate them in ordinary ways. It worked for O level because you could just memorise how an answer should look. It sort of worked for A level only because I chose highly visual subjects. I've never been able to access any higher level course for more than a short time - I simply can't do it at all, despite an IQ that in theory would give me a high Degree.

As an adult after school had finished, I had no help, I had a very ill parent and we had zero money as a family so I had to get a job. Back to 'living hell' again - I had no clue how to socialise, what to say or do. I was bullied relentlessly again by my boss, refused any promotion because I didn't know how to sell myself, paid a pittance despite being more capable of getting the answers right than my bosses were.

I tried relationships, and because I couldn't understand the body language ended up sexually assaulted. Just one example. There's others.

I tried financial decisions, and because I coudn't understand that people lied, ended up defrauded out of a lot of money by someone I thought was a friend. I still have little idea what a friend really does or doesn't do. Just one example. There's others.

On paper, I'm really lucky. In reality, personally speaking, I've needed a hell of a lot of help and never had any before I could afford to pay for it myself. I now never work alone, as I know that there's no way I can cope. I never live alone - I can't cope. I'm bad at looking after myself, and need constant reminders to check things that others find just so very easy to remember.

The pain from the constant sensory overload, the balance problems etc - none of it makes life easy if we don't have the help we need, tailored to the needs of that particular individual.

I do love my life, yes, but it's so very different to the lives of others around me. The ease with which they can say "hey, let's go out for the evening". I literally can't do that. The ease with which they can see and hear other people - I can't. The ease with which they know what to say. I don't. I've made my life work by having to do everything differently, plan everything like a military campaign to make it work for me, ensure there's always people around to ask, to help. It's exhausting. Triumphant at times, but exhausting.

That's the middle ground, I guess. It certainly is a spectrum.

amber32002 · 18/04/2009 08:36

PS never had a penny in benefits and never wanted any or thought I should get any.

nikos · 18/04/2009 09:28

Amber. Because you are so articulate on these boards I tend to forget that daily life is a struggle for you. Thank you for sharing that.

amber32002 · 18/04/2009 09:34

Nikos, I learned message board stuff the hard way. First five years or so I made every mistake in the book every bloomin' time and got shouted at all over the internet. I learned that I could know all sorts of useful things, but be entirely unable to write them down in ways that didn't annoy everyone.

Hours of study of how it's done, day after day, and seeing what works with people and what is a definite no have really helped. I still don't always get it right, but I've learned to say "help!" and use a lot when I foul up.

daisy5678 · 18/04/2009 10:36

Amber, I wasn't talking about you. I was talking about my sister and the fact that I find it hard that she compares her mild Aspergers to my son's more severe autism and to others' very severe autism.

I don't like the fact that she presumes her experience is others' too, but I do get the fact that probably comes down to her Aspergers.

None of that was about you or everyone with Aspergers. That was my point: everyone is different.

saintlydamemrsturnip · 18/04/2009 11:11

Givemesleep it sounds as if your sister is using her dx as a way of not dealing with her depression or something if that makes sense. I would get annoyed in your situation too.

daisy5678 · 18/04/2009 11:11

I just do agree with this that mrsturnip said:

"I will add though that I think some families do have it harder than others, that some children are more severe that others and I think it's not helpful for them to pretend that isn't the case. Some children with autism cannot go outside without 2 adults with them at all times, they cannot access any activities at all- not mcdonald's or the beach, or the cinema or a shopping trip, they may be unable to take a simple walk, nor can they communicate with anyone at all in any way, they may constantly show self-injurous behaviour and not be toilet trained as adults. To suggest that they're the same level of severity as someone who can access mainstream playshemes and who will be able to go on and live independently is not helpful nor fair. No-one gets upset suggesting different levels of a physical disability so I don't know why it's often seen as unacceptable to suggest there are different severities of autism. Of course there are. There may be problems defining them, but there are certainly different severities."

daisy5678 · 18/04/2009 11:16

Yes, Mrs Turnip - totally.

She wanted the dx as a way to get more support from SS too - she thought it might get her more help than the OCD/ dyspraxia/ depression label she had before.

She also wanted it as it would mean she can still only work a few hours a week and can still get Incapacity Benefit.

She often says that she'd like to be a child again and have people just look after her (which our parents really didn't do - so I always wonder how much of all this is just a reaction to our pretty crappy childhood and wanting to get SOME parenting - I was probably more of a parent to her than my mum for a lot of her life, but I can't give her the time I used to before I had J.)

amber32002 · 18/04/2009 14:05

givemesleeporgivemechocolate, I didn't think you meant me, no. I was just trying to continue the discussion about the different 'grades' of autism a bit, I think?

daisy5678 · 18/04/2009 14:10

Good - you just mentioned the benefits thing which I presumed was a response to what I'd said about my sister.

amber32002 · 18/04/2009 14:16

Well, it was a thought about what your sister had said, but I didn't think you were comparing me to her, no. Just that I'd never thought of trying to get benefits. I fight for others to get them when needed, though.

When I worked out that I couldn't make employment work for me, I started my own company so I can work the way I want to work and arrange things in 'Amber-friendly' ways.

daisy5678 · 18/04/2009 18:59

Wow - must take some effort to start your own company.

bullet123 · 18/04/2009 19:56

I don't compare (or at least try not to compare) my being Aspergers with someone who is severely autistic. But like Amber says my natural reaction is to internalise everything and to not be able to ask for help. So people presume I am coping as well. I tend to keep quiet about a lot of things as I don't want to be seen as saying my problems are as severe as, say, MrsTurnip's ds1. But that doesn't mean they don't exist with me. I don't claim any benefits or ask for any paid support because I don't think I should, but that doesn't mean I coast through life easily enough. Some days or situations can go fine, other times I struggle to even get a few words out or acknowledge anybody, to give you an example.

amber32002 · 19/04/2009 07:02

Effort to start a company? Not as much effort as being an employee. When I was an employee I could be ordered to do almost anything, anywhere, any time. And made to work in environments that were stressing me out. And expected to cope with any and all office socialisations all the time with people I couldn't handle and who couldn't handle me. That was in the days before a lot of the disability laws applied, so it was "get on with it or shut up or get out". I spent more time apologising to people, or getting stressed out, or taking time off through stress, than getting on with my work.

Now I can choose people who can cope with me, and I can work in ways that suit me, and immerse myself in the rules and policies and procedures rather than have to do the face to face marketing all the time etc. You have to be really, really logical and fair with the money and the laws and treating people with the same respect, which are often good ASD skills. I have to have good help for the staff things etc, and never work alone, so I've built the business to be ASD-friendly and well supported for me. In meetings, I take someone who can recognise and 'see' people, for example. In interviews, I always work with someone who can interpret body language etc. I work in writing rather than face to face, if I can. Lots and lots of ways to adapt a job well enough for me and others with an ASD to cope with it.

It can be done. Not entirely easy, but easier than before for me.

bullet123 · 19/04/2009 11:15

In almost all of my jobs I instinctively went for those in small office environments or working on my own. Also ones where I had a certain amount of free rein so I wouldn't have to work directly with people unless absolutely necessary. One of the worst jobs I was in seemed fine from the start but my immediate boss was not only a micro -manager (I cope better the more control I have of things I have to do) but would also insist on talking at lunchtime. Usually with her mouth open whilst she had some food in it.

amber32002 · 20/04/2009 20:04

Urk! That would have had my notice given in to them in a very short space of time!

I loved being a computer trainer. Could do as I liked most of the time, wrote my own courses so no surprises there, people always made the same mistakes and asked the same questions. Excellent. But got into lots of trouble by not being able to recognise my own boss, saying inappropriate things to important visiting clients about how useless some of the products were (well, it was the truth ) etc. Oops.

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