Aspies For Freedom

Hi,

I was just wondering if there were any other people like me here who are not especially high functioning and who have Learning Difficulties or Specific Learning Difficulties?

There seem to be sites for people with LD / SpLD and separete sites for people on the spectrum - but I haven't really found anything specifically for people with both!

So, I was thinking that maybe I would start my own thread.

I thought that perhaps initially anyone who wants to be part of this thread could start by saying a bit about themselves?

So here goes:

I am 27 and I live in UK.
I work part time in the arts. (Can't quite manage full-time at the moment for health reasons)

I have diagnosis of AS and also various SpLDs and mild retardation / learning difficulty issues

I also have some physical health problems, although I won't bore you with those.

I like music and reading and computers and the countryside and I am also interested in disability equality campaigning.

So that is a very short introduction to me!

I look forward to meeting others on this thread.

P.S. Please don't be mean. Thanks

Hi Emmy,

Thanks for replying. It is interesting that your issues are said to be placed in the brain stem. Do you know where I could find out where (if indeed it can be narrowed down to one place) my issues might come from?

I have always had a "sluggish" liver, so one theory is that toxins which it should have filtered out instead made their way up to my brain - but I tend to be a little wary of theories about "toxins"

Hi Lucie, thank you for your post. It is certainly an interesting idea that the learning difficulties could resolve. The extent to which they effect me has certainly been very "up-and-down" throughout my life which has led to misdiagnoses or me being told that I just wasn't trying hard enough! It wasn't until I was 24 that I got a "firm" diagnosis and the Educational Psych did say that there can be some variation of effect - in people with all degress of learning disability - depending on stress, anxiety, other mood disorders, physical health, teaching and learning methods etc.

No worries - I'm dyslexic so I am well are that mistakes happen sometimes!

I'm really sorry to hear about your friend Nancy.

It is interesting to know that there are other people out there whose issues are similar to mine.

Thanks Emmy

I know what you mean about psychiatrists not understanding what someone's day to day problems are. They seem to think that how you behave during a 30 min appointment must be exactly how you are all of the time!

I also need reminding to do things. I have to rely on things like setting alarms in the calendar on my phone and setting reminders in Outlook and using lots and lots of post-it notes in my room to remind me. (I live with an elderly relative who is even more forgetful than me!)

I try making lists sometimes, but then they get really long, and I end up putting ridiculous detail on them, and not knowing what to write and what not to write....

I like games consoles too, although I can't afford any at the moment. I do have a computer though, so I can play some games on that, although many of the strategy ones are too difficult for me to understand. I like "shoot-em-up" games best because there are no complicated instructions - you just do as the name says!

I did well at rote-learning tasks at school but struggled with anything else.

I have co-ordination problems too, especially with fine motor skills. I can't really handwrite that easily, but I can type and find it a lot easier and I try to do as much writing as I can on the computer.
Does your son have a diagnosis of dyspraxia? I got diagnosed with this at 24. It didn't change anything, but it was nice to have a reason for my difficulties with co-ordination.

I totally empathise with the difficulty with shoelaces and eating!
I didn't learn to tie up shoelaces until years after my peers. And I still find it difficult - I really have to focus to be able to do it.

I have got better at eating through practice, but it is still difficult and requires so much concentration for me, and I can only use cutlery if the handles are a certain shape. They need to be flat and / or 'chunky' or I can't grip them or control them properly.

I've tried to use chop-sticks a few times....unsurprisingly this was unsuccessful!!

Hi Emmy,

How are things?

I had this exact same problem! Even now I often have to pause and think before typing or writing 'b' or 'd' to try to remember which way round they are!

Hi Lucie1,
I like a wide variety of music. My favourites are music from the Baroque period and I like a lot from the classical period, and am a big fan of Beethoven.

I also like more modernist and experimental music like Jonathan Harvey, Stockhausen, Aphex Twin, Ligeti etc and the music I compose is more in this style.

I like some rock music too - especially Muse and Queens of the Stone Age.

I also like world music, such as Compay Segundo and Miriam Makeba.

And I like Nina Simone, Dinah Washington, Aretha Franklin and Louis Armstrong.

Re my work, I am a disability access officer for a visual arts and education organisation. It is good as people here understand about AS and learning difficulties and I can use my experiences and understanding of 'disability' (as much as I hate the 'd' word!) to help others. Also, they don't mind that I sometimes need to ask things that seem obvious to other people, or that I stim and tic.

What kind of work do you do?

Hi Batman55,

It's okay - and believe me, I really do understand what it is like to lack self-confidence.

Regarding why I describe myself as having mild retardation, I guess the short answer is that I have been consistently medically diagnosed as such.

It probably isn't the best way to describe myself, as "***" is used as an insult. But I am not ashamed of my diagnosis.
Also, I don't want to let people who use the term in a prejudiced way let me become afraid or ashamed of what I am and how nature made me.

Although it took a lot of time for me to learn not to be ashamed as my family and my peers made sure that I knew they considered me to be "defective".

As I got older and was able to gain better understanding of my 'differences' I realised that I have as much right to be here as anyone else. I do my best to be a good person and that is what counts - not the fact that I find a lot of things more difficult than the 'average' person.

I'm sorry that you are having difficulties with self-esteem and that this thread has made you feel more depressed - this was certainly not my intention.

I just wanted to meet others who had similar issues to me - although if people want to talk about their feelings in relation to these issues (lack of self-esteem, depression etc.) this is okay too as these things can often go with realising that you find a lot of things more difficult than others.

My hope is that by talking about feelings in relation to these issues, we can make each other feel better, not worse!

Thank you everyone for your kind words.

Batman55, I'm glad that you are feeling a little better.

Batman55 - I did not every say that you had received a diagnosis - I was answering your query as to why I would refer to myself as ***.

I thought you were feeling better because in response to another poster you wrote "You have made my night".

I cannot tell when people are being sarcastic and as this was not indicated (e.g. by writing </sarcasm> for example) I assumed you meant this and was pleased as I thought this meant you felt better.

I didn't mean to be unpleasant in any way and I certainly didn't mean to offend you - there seems to have been a huge misunderstanding here.

I don't know if this helps, but the way that 'mild retardation' applies to me personally is that I have a lower mental age than my physical age - quite a bit lower in fact!

I also have specific learning difficulties (dyslexia, dyspraxia, irlen syndrome, prosopagnosia, topographical agnosia....) and also low IQ which is used by some medical professionals (although not all - opinion varies) is indicative of a diagnosis of learning difficulties (as opposed to Specific Learning Difficulties where the IQ is not necessarily particularly low)
I also have limited self-help and self-care skills - again which has been used to confirm my diagnoses.

But this is just my experience and relates to the doctors that I personally have seen.

I would imagine that there is variation among different medical professionals, and also among the individual patients themselves.

This is simply my individual case and I am not saying that this does or should be applied to anyone else.

Terminology varies from place to place - and person to person. For example, in England it is generally considered wrong to use the term 'handicapped' but in other countries it is still acceptable. There is even an international society for the 'handicapped' - they have that word their official name!

I was wondering if anyone had read this http://www.disabilitynow.org.uk/latest-n...tment-case

Whilst I certainly don't condone the way that this individual person's case has been conducted, and I don't think that these kind of procedures should become 'standard' or 'policy' for people with these kinds of disabilities, it has made me think.

As a learning disabled person with a lowered mental age, I found the idea of developing an adult body thoroughly disturbing. It means that people assume certain things of me - such as that I have certain capabilities and understanding which I actually don't.

I also find the whole menstural process (sorry to be gross!!) disturbing partly because, for someone who has difficulty looking after themselves (i.e. me!) it is yet another thing to have to deal with and something that seems oddly irrelevant to me and that I feel detatched from. I feel like since I've had an adult body, it is like my body isn't mine anymore, because mentally I am still a child.

I also worry about what happens as I get older. As a child, it is, in some ways, easier to 'get away with' having learning difficulties because there are those people that angelize you and think it is cute. Even as a young adult, although many people bullied me and took advantage of the fact that I didn't understand their intentions, there were also those who thought it was 'sweet' that I had a childlike nature.

But as you get older, the possibility of people thinking your child-like nature is 'cute' diminishes and the image of the learning disabled middle aged person often evokes thoughts of pity and disgust among the non-disabled population.

In twisted propaganda, the image of the learning disabled adult is used to show just how useless such people are considered to be and to justify euthenasia, or at best, being institutionalised. And we all know what the Nazis thought of people with learning difficulties...

Anyway, I was just wondering what people's thoughts were on these issues or if anyone could relate?

I appreciate that this is a controversial subject and it is not my intention to offend anyone or start arguments or conflict. I just want to be able to be honest about my feelings and concerns and to share opinions, ideas etc. with others who can understand or who have their own related views and experiences that they would like to express

I see what you mean! It is pretty confusing!

From the definitions that I am familiar with, something that causes you difficulty in a specific area of learning is a specific learning difficulty. These would include dyslexia, dyspraxia, spld, non-verbal learning disorder etc.
Although there is difference in learning style, there is still an average IQ

Where there is lowered IQ and / or lowered mental age and / or limited self-care skills, these are learning difficulties or learning disabilities.

This is my understanding, but as we are discovering, there is a lot of variation in definitions!

I guess the main way that I know I am considered to have mild retardation is that this has been a consistent diagnosis and also the consistent opinion of family and teachers.

Regarding the 'low' functioning, this is something that is harder to determine. Of the people on the spectrum that I am in regular contact with, I am certainly not among the most high-functioning, but I guess it would not be accurate to say that I am low functioning either (hence the title of this thread, because I didn't want to commit myself to 'low' or 'medium' functioning label).

If I were forced to choose I (and probably my Neuro-Behavioural specialist) would go for the 'medium functioning' option.

I know what you mean about it having bad connotations - unfortunately terms like 'retardation' and 'learning difficulties' are often hijacked by people who want to use them in a derogatory way, which makes things difficult for those of us who have to live with such diagnoses and who want to just make our way in life.

I live with a relative at the moment, so am not quite independent. I 'pay my way' but I have trouble managing money, so I give my gran an agreed amount every month to cover rent and bills and she splits it up accordingly among all of the various bills that need to be paid.

I also see a social worker who helps me and I have a support worker from a local organisation for adults on the spectrum.

I am looking at moving out, but I will need supported housing and there is a very long waiting list - I've been on the list since about February this year, and might get somewhere by next summer if I'm lucky!

Your cat sounds very sweet. I hope he feels more settled soon. My gran has had many cats over the years, some from abusive homes, and they generally do settle after a while and start to feel comfortable, relaxed and safe. Please keep me updated - it would be great to hear of his progress.

I actually started speaking early if anything - but this was mainly echolalia - I was late to speaking in a way that was 'correct' and that was actually useful for conveying meaning.

I had major issues with echolalia until about age 7, and even as an adult there are still remnants of it, although my speech is okay now. Not great, but okay. And I am verbal 70-80% of the time - when I am stressed or tired (or even if I've just been around people a lot) I can become involuntarily non-berbal with only little warning!

I am learning British Sign Language so that I have a 'back-up' language with which to communicate with friends - although I need to have one-to-one tuition as my learning difficulties mean I'd be pretty useless trying to keep up in a class learning envorinment.

Has your son tried makaton? I didn't use this as it wasn't really known about when I was little, but I know of many other young children who have benefitted from makaton, both as a communication form in itself, and as a 'stepping stone' to help with acquiring improved verbal skills.

That sucks. I hate it when people try to bully or exclude, and find it especially hypocritical when someone will say "accept us who are different, but why should we bother with 'you people'." It's just...uck, so typical of the negative side of human beings, which frustrates me because it's one of the human faults that is a lot easier to work on and get over than others.