Feeling frustrated

HumbleBumble said:

Hi, thanks for the links! I

Absolutely my pleasure ~ it makes so so so happy to pass on knowledge that is going to prevent a whole series of ignorance generated social cataclysms and personal disasters! :-)

HumbleBumble said:

I've done the AQ50 & she's scored 98.

Most people can only get a maximum score of 50, with mine being 43 but actually 46 as I got habitually into throwing a few marks at school tests and exams as used to bomb on some and max out on others, with my comprehension being at university education level, so getting lower marks where I could get them ~ lowered everybody's expectations and I got less stress and they were not so baffled. With maths though being one of mega failures I imagine your daughter scored perhaps half 98 as 44 ish maybe. 

HumbleBumble said:

Obviously I'm not a diagnostician but I think it looks highly likely she would be diagnosed, if they would take me seriously!

Well if you follow the guidance in the NAS information pack involving your legal rights, if they do not take you seriously you would be able to get the authorities to take them seriously.

HumbleBumble said:

I am preparing a book of why I think she needs assessing...so far there are 5 A4 pages, both sides! Am also gathering as much information as I can with regards to rights & will be going back to the GP armed with EVERYTHING I can so he can tell them they need to asses her. When I spoke to him originally & he agreed to refer her to the autism team he didn't ask for reasons he just said "I trust your judgement, you know what you're talking about & know your child best" shame not everyone thinks like that! 

I got eye-rolled and ignored for an hour with the first psychologist when I went through the AQ50 listing with them

Then I did a teaching plan session and presentation lasting no longer than twenty minutes, so as be concise factual and OFSTED rateable ~ but got told it was all very interesting but we had work to be getting on with, and was informed that I had been wasting time and taking pleasure in so doing as the sessions went on and no with no improvements happening ~ all recorded on dictaphone by me, and in letters by them, until I discharged myself on health grounds whilst my GP was demanding to know what was going on from the psychologist! The last letter explained that it was me being difficult and obstructive and I just needed to apply myself harder! 

Then once I had gotten the information pack, I wrote a two page introduction involving a summation of being almost unproductively in therapy for nearly thirty years, which I put in an envelope along with the scored AQ50 Test, an underlined and ticked set of fact sheets about Autistic hypo- and hypersensitivities, and another fact sheet set  on the diagnostic process and my legal rights ~ which were all photocopies, that were altogether sent by recorded delivery to my GP surgery. 

I then booked a telephone appointment with my GP, who excitedly and in exasperation stated, "Of course ~ why didn't we spot this earlier!" Which due to complete and utter stunned disbelief on being taken seriously, I succeeded in not answering that rhetorical question with a major factual listing of negligence, malpractice and multitudes of accompanying derogatory statements about delusional therapists, with my GP then saying they would refer me for the Asperger Syndrome assessment, and then the letter came through telling me there was a two and half year waiting list ~ which I was really really pleased about as it gave my body and mind plenty of time to acclimatise to everything.

Due to having temporal aphasia (no sense of time passing) on account of a near death experience at the age of three, everything just drifted into a unified cohesion for me, and the diagnosis was the most amazing therapy session I have ever had ~ as psychology is a major big-time special interest of mine and the psychological neurologist and I got into some serous shop-talk about the relationship of the Id, the Ego and the Personality; involving Freudian anatomical modelling, Jungian psychological analysis and my take on having Autistic consciousness, experience and awareness.

So I really related with your GP being somewhat excellent, so hopefully too your daughter and you will find yourselves in the most appropriate assessment centre all in good time, with hopefully the postcode lottery working really well for you also.

HumbleBumble said:

Thanks for the recommendation on the book. That could come in handy for the family members that still don't get why my children are "so funny" weird funny (apparently) not haha funny...don't know how, I think they're b****y hilarious! 

I did my family members with the book ~ as I had been judged as being a lazy good for nothing time-waster rather than an exhausted excellent for other things weirdo! :-)

Well it might be in part that it takes being autistic to 'get' autistic amusements ~ yet the thing of finding funny-odd things about your family funny-ha-ha might just be enough insanity to consider yourself blooming gifted! :-)

Hi, thanks for the links! I've done the AQ50 & she's scored 98. Some of the questions I couldn't answer so her score could go up by a few points. Obviously I'm not a diagnostician but I think it looks highly likely she would be diagnosed, if they would take me seriously! I am preparing a book of why I think she needs assessing...so far there are 5 A4 pages, both sides! Am also gathering as much information as I can with regards to rights & will be going back to the GP armed with EVERYTHING I can so he can tell them they need to asses her. When I spoke to him originally & he agreed to refer her to the autism team he didn't ask for reasons he just said "I trust your judgement, you know what you're talking about & know your child best" shame not everyone thinks like that! 

Thanks for the recommendation on the book. That could come in handy for the family members that still don't get why my children are "so funny" weird funny (apparently) not haha funny...don't know how, I think they're b****y hilarious! 

I hadn't really thought about it as thinking out loud...I find I talk out loud when I'm doing something, so it's not so much thinking as a running commentary. I'm doing the washing up, I'm washing this cup, I'm now washing this spoon etc but I think in pictures, which up until recently I thought everybody did! So thinking out loud could make sense if she's trying to process the information going on in her head. She does talk an awful lot about anything and everything! And it's usually pretty random

Processing the most complex things out loud. YES. [star]

If you have a chatty ASD child, they often think out loud - with absolutely no filter - all the processing is going on around people they trust as sort of a half conversation and half processing.

You're literally hearing her brain tick - in a way that you would probably keep to yourself - you'll hear every angle and perspective as she bounces it around until she 'solves' it.  

She's also deliberately doing out loud so other people can chip-in and maybe add something new to help her work it out.   It's all just data so there are no emotions attached.

When she finally finishes processing the death-thing, she''ll move onto the next problem that she needs to solve in great depth.    

You can 'accidentally' drop some new subject for her - something big - like space and planets and star systems.   Leave a colourful reference book for her to find.

Who knows. As I said in my reply to juniper, it doesn't really so much worry me, I just find it peculiar in the way she feels the need to bring up the subject of death so frequently. Her detachment from emotion surrounding the issue of death may well be learned from my own lack of emotional response. The need to talk about it all the time certainly is not. She also talks about the end of the world a lot & how it's going to happen soon & then we'll all be dead so can see each other then! 

This is a lovely idea thankyou

She just seems very empty when she talks about it. There is little if any emotion or attachment there. Although I must admit I am rather like that myself...without meaning to sound too dead inside...my brain sort of says, oh well that's sad, everything that lives dies & if there is anything after life I'll find out then & we'll be reunited & if not then I'm dead so what would it matter?! So that could be why she shows little emotion when someone has passed because I express little emotion myself. What I find odd though, is at least 3 times a day the topic of death arrises verbally or while playing a game. She will pretend to die, or her toys have died. She asks what it feels like to be dead. She'll squash an ant & say oh...it's dead...but not be bothered by the fact she killed it. She said graveyards are nice places because everyone is dead so cannot bother you. I'm not over worried by it just find it somewhat peculiar that's all

JuniperFromGallifrey said:

This was in my head this morning while hoovering up! What's interesting is that she wants to see what is - On the Other Side. This isn't exactly an obsession with death. I had an obsession with matters of the infinite when young (still do, just not as terrified).

I wonder if she's fascinated by the way everyone around her behaves when death is mentioned?      Everyone behaves differently depending on their beliefs - maybe she's picked up on the gravitas and randomness combined.    She needs to talk about it to clarify her own perspective.

^^ this may be an answer to her collecting her own found objects. Yogurt pots with a hole at the bottom with dirt and rocks and maybe hidden wrappers become pots for cuttings. She can line them up in order as she likes. If you have a little extra money, they can go on their own shelf with a grow light. And if that grow light has multiple colours on it, it may help her find a reason for 'red' lights to be useful rather than scary. 

*learning to engage with plant-life is valuable for those of us in need of exquisite disciplines (who value control). When faced with the frustration that eco-systems need detailed tending to, enough failure will push us to learn the proper methods of engagement. 

HumbleBumble said:

She's oddly interested in death. She has said she wants to die to see what being dead is like. She wants to go for a day out to the graveyard. She always talks about the death of her grandad, Nan's dog, uncle, but there's no emotion attached to it, it's very matter of fact.

This was in my head this morning while hoovering up! What's interesting is that she wants to see what is - On the Other Side. This isn't exactly an obsession with death. I had an obsession with matters of the infinite when young (still do, just not as terrified).

The young physicist or biologist begins by seeing the most obvious practical problem. Then grows into the understanding of all these elements surrounding it. Issues of Decay and Breakdown are important to have a solid functioning knowledge on for the gardener or the botanist, the immunologist or the mycologist.

Maybe some day she takes advance research in skin care or solves the massive problem of nuclear waste. These children don’t just end up as morticians or philosophers, the death / life cycle is complex & the gateway toward it is deaths "door". Where or where DOES it go???

Is it possible to get her well invested into growing her own plants or getting a small microscope? Finding children's tutorials on gardening perhaps or second hand picture books with bugs and pond life and microbes. If you can help her examine the progress of living things or maybe examine a leaf as it dies every day, this may also be a way of affirming her interests so she can grow into whatever amazing adult human she will become :) 

HumbleBumble said:

Hi everyone!

Hello HumbleBumble :-)

HumbleBumble said:

This is long. I am sorry in advance.

I love, love, love long posts ~ especially very well written ones that take me through a major recollection involving the beginning of my preadolescent development as an autistic type, with just a few variations like the egg thing.

In order though to keep this short as perhaps most thoroughfares of advice should be, possibly call the National Autistic Society (NAS) helpline on O808 800 4104 (night or day on this one) ~ and order an information pack on the diagnostic procedures and your and your child's rights and all that about getting diagnosed. Also, avoid (if you have not already) making verbal requests about getting a diagnosis for yourself or your daughter without having done it in writing first, as including the most relevant supporting information such as can be downloaded from the Cambridge University Autism Research Centre website (with the more detailed AQ50 and the much simpler AQ10 being the more common go to tests).

Also in terms of what's going on for your daughter developmentally ~ and what to expect when and how to cope with it ~ there is a book called 'The Complete Guide to Asperger's Syndrome' by Tony Attwood, that you might find to be essential reading and referencing possibly. :-)

Fast tracked for diagnosis... somebody would have to see what I see for that to happen! I had the same problem with my eldest daughter. I first saw signs when she was around age 2 bit whenever I said anything to anyone it was "oh she'll grow out of it" or "all kids do that" she had sleep therapy at 2 & behaviour therapy at 2 & a half...nothing worked. Her dad said it was my fault she was the was she was because of my "s****y parenting & being too soft & letting her get away with everything" he's quite authoritarian & tried to discipline her but it just didn't work. Maybe that's why I didn't get the "bad behaviour" because I refused to use time out or punish her for things I could clearly tell were out of her control. She didn't get a diagnosis til she was 11 & thing went t**s up when she started secondary school. Then people saw what I saw & agreed that maybe she did in fact have ASD after all! Same thing happened with my son. He didn't talk til he was 3 & was told "boys are lazy" he didn't ever have any meaningful interaction with anyone other than me, again "it's because he's a mummy's boy & you mollycoddle him" he finally got a diagnosis age 8 when his teacher asked me if I'd considered the possibility! Finally! I guess I'm just really worried about history repeating itself and my daughter not being given the support she needs before she reaches crisis point like my eldest daughter did, just because she can supposedly interact with other children...it is all really frustrating & I'm questioning myself like...is it me? Am I imagining it? Am I MAKING her like it? I don't believe in my heart that I am but there's always that niggle of self doubt.

Holiday...mmmm...I wish. Holidays are a no go as the children really struggled with the last few due to not liking new places, new smells, change of routine etc so we just do day trips now as it's a lot less stressful for them. I'll take a nice break when they're all grown up & moved on.

I really like the drawing idea, thanks. I'll try that. 

Your grandmother sounds like a lovely person as do you. Thankyou for replying.

I've always talked fast too & far tooo much, everyone is always telling me, that's how I know! My song they used to sing me when I was a child was yakety yak by Chas & Dave  I have one child who talks too much, one child that barely talks at all & one child that talks as though he is either doing a drama performance or a giving a lecture!

I use the foam earplugs mostly whilst I'm out or when I am forced into social situations as headphones I found are apparently considered rude haha. I can be quite jumpy with noises out of my control but I've always put that down to cptsd, am learning that it may not be just that now as I've always been this way since before the trauma so I understand how my daughter's feel & am always mindful to accommodate that. 

Some voices fry your brain - I know that feeling! It annoys me so much, I don't watch TV much for that reason, watch the odd documentary & mostly David Attenborough...could listen to that man for hours! I also listen to Steven Fry on audio book other than that the pitch of the TV or radio seems to really irritate me & it's nice to know I'm not alone with that one! 

Earplugs may be an idea for my daughter...I don't know why I never thought about that! Thanks

Here is what I hear is maybe your Most Pressing Concern: “All I want is to be taken seriously” Goodness, I feel that. It sounds to me like perhaps you should get fast tracked for a diagnosis! It also sounds like you could use a holiday. :) 

This may sound strange, but, as I grow and change, my son manages to simply become the same. I don’t find myself teaching him, just sort of being and becoming. 

However, maybe you’ve had a 3rd child who wishes they were an only child. 

Just looking at this here’s a quick thought!

Could she draw a picture of a girl swinging on the chair and then add a big “Please Do Not” Or something with a Kind No, rather than a Cruel No (if that makes sense?) I’m more happy to comply when I feel like someone (even myself) cares about my well being rather than is simply rendering yet another command.

Then allow her to tape it up somewhere near the chair until she feels she doesn’t need it any more. This may be useful for other things: Draw one for both sides of the stairs. If it’s a life-saving effort, having a few pictures around the house will help you! Drawing her own memes and putting them where she wants to, may also give her a small introduction to self-regulation. 

She’ll need to be reminded this is for her to control herself and not others. We all need to remember this! In my family it is that we remind each other we analyse and critically evaluate THINGS and not People. The NTs all seem to crumble under our analysations and often are too quick to take offence. 

Danger awareness is quite massive. My mother treated everything with such intensity and chaos I didn’t know what was up or down. But I believe I got this ASD-ness from my grandmother who would remind us to do one thing at a time or allow her finish a thing and then she would give us full attention. Our time limit was fluid, it was when she put dinner in the oven or when she finished the dishes. We were also offered the ability to help if we wanted to simply be with her. Giving us options: you can wait or help me, made me feel included, wanted. It was easy to let her be. 

She was also light-hearted and logical about most things but when it came to things of grave importance she was suddenly serious. I took this and applied it to my own parenting. This prioritising helped him take caution when I would actually get upset.

Children are desperate to trust and feel safe in their surroundings. Safety isn't always about physical harm. It's usually more about reliability, feeling heard and accepted. From what it sounds like, she's incredibly intelligent, hyper-aware even. From when my son was about 2 until he was in his teens, I had embarked on a massive journey of personal growth: a little at a time. As I changed and acquired new ethics, principles, or just learned new ways of affirming others (including myself) and the world around, he was watching and applying these new habits. It was a massive undertaking but well worth the journey. I went from feeling unheard and overlooked and not taken seriously to having language tools to speak to others in a way they wanted to listen to or articulating a thing (after enough thought) with a much better clarity. Self-growth as a mother always spills on to our children :) 

I talk pretty fast; perhaps because I try to 'force' myself into articulacy.

I find i can't cope with multiple or staccato sounds simultaneously - I can feel the hairs on my neck prickling and my brain overloading - I use those foam ear-plugs - there's lots of different types - some are smooth foam with a plastic head-band, others are squashed up and expand in your ears to stay in place-  they can feel strange initially but you forget about them after a few minutes.    I don't like the squeeze of ear-defenders - also, my ear is just bigger than the cup size so it's a horrible feeling..

Routines and predictions are important - unexplained delays or changes are unbelievably and irrationally annoying.     I *hate* getting stuck in traffic.  

A lot of my issues are external cyclical noises - dogs barking, someone else's music, motor bikes - all the out-of-control things that can impinge on my concentration or task-focus.

Some voices fry my brain - like most tv presenters - they have a beat frequency that is too high - about 150 bpm - it's too fast and it makes me jittery. 

Thanks Plastic, 

I try to keep noise in the house to a minimum as I am aware that she gets very overstimulated & frustrated when there is lots of noise. My other daughter is the same so I have plenty of experience making it comfortable noise wise. My son on the other hand likes noises & likes to bang things! That causes a few issues when the girls are struggling with noise! I don't cope well with all the different noises as I seem to hear EVERYTHING. The tap dripping, the cars going by outside, the cat walking across the floor, the hum of the fridge motor along with the constant buzz in my own head all at the same time..it completely overwhelms me & my ability to function goes to pretty much zero so I generally tend to wear headphones at a low level to block it all out. My eldest daughter does the same. I don't feel that's an option for her though as noise is in issue. I've tried ear defenders & most of the time she manages them well & they help tremendously but sometimes them being on her head causes her stress as she feels in her words "as though they're trying to squeeze her brain out" also the school will not allow her to use them as they don't believe she needs them so that causes problems. I've tried explaining to them that she needs them because she is getting overstimulated by the noise & then melting down when she gets home but I think they think I'm exaggerating the severity of the situation. I feel like everyone thinks that I'm exaggerating it all to be honest. All I want is to be taken seriously & for her to get the help that she is entitled to. I'm also worried that by helping her too much myself she will become so able to manage that she doesn't get diagnosed at all & will then struggle with support later should she need it! It's really stressing me! I've tried social stories but she sees them as just that...stories. I've tried visual timetables but then when something doesn't go exactly how it is in the plan, like someone turns up to the house without an invite (my pet peev) or we get stuck in traffic so don't get home bang on 4 o'clock it causes even more issues so we don't do that anymore. I really don't know how to help her manage it all. I'm currently doing a support workshop but even they are just covering things I already know, offering advice on managing behaviours that I've already tried...any advice from anyone is more than welcomed

Hi

From what you say, she does sound to be on the spectrum-  but I'm no doctor.

She sounds 'empty' and desperate for knowledge and detailed guidance to build data and confidence.     The 'not working things out' is very common - she probably needs explicit programming of routines and expected behaviours and careful coaching to remind her - repeatedly - until it becomes second nature.   

You have to understand that we are usually grossly overstimulated all the time - so the brain is going a million miles an hour all the time - small details to remember drop off the edges until they rise up the priority list of actions.

Repeating things is a comfort - it's learning a skill or sounds that are pleasing and just slot nicely into a brain pattern - it feels good every time it happens.     Same with touching things - the craving for information and sensation.   Same with toys - exploratory sensation 'delight' toys are more fun than an inanimate doll.     A doll is the same as a brick or lump of wood.      

She's copying trying to see if there is a trick she's missing and also learning to mimic to hide in plain sight.      Girls get very good at mimicking so often miss out on a diagnosis - they are capable of fooling the assessor in the short term.

We are programmed from year dot to be honest and truthful - the social filter makes no logical sense - you want us to randomly lie?     Why would we do this?.      Honesty and bluntness is the result.

She's aware that you don't approve of some of her behaviours - but the line she crosses is variable and forever changing - if she considers that she's been good, it's extremely annoying to be destabilised with arbitrary rules that make no sense.

We crave stability, repeatability and predictability - anything chaotic is too hard to process - noises, actions, bright lights etc.   Unfortunately, we want everything to be controlled and zero stress - and children learn to control their parents to get their own way - but that will mean she will use that control to retreat from life.    

Coping strategies are more useful for her in the long term as her life will become more complicated as she gets older and she could eventually become an accidental hermit as the end result of avoiding all stress.