CALLING WOMEN ON THE SPECTRUM diagnosed or otherwise!

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Hiya everyone, as a woman with diagnosed ADHD and a big hint of Autism (not picked up, but I know it is there!) I get fed up with everyone discussing .............men, boys, testosterone and fathers!!

WHAT ABOUT US?? The women who largely go unnoticed. Ooh yes I guess there are a couple of studies out there worth reading but what does being on the spectrum mean for US, WOMEN. A lot of us SINGLE women now?

How do we cope with being IGNORED, BLAMED, ACCUSED?? Boys are much more likely to be picked up, especially if they are showing signs of Oppositional Defiance Disorder or worse Conduct Disorder. But the girls, the bully playground information warfare gang? The quiet ones that prefer to sit on their own with a computer or book. What about the women who have Oppostional Defiance Disorder or Conduct Disorder (yes girls just manifest differently, bit more subtle!). Let's not forget the manipulation, deception, fraud and covert crime. We may not throw bottles through greenhouses or use our fists to hit someone (well some do! ) but we have voices, words and mouths .....................that alone can do a lot of damage. I can immediately think of some teachers that I AM SURE are on the spectrum.............they teach my children, ugggg, you know those teachers that cannot stand your child (wouldn't admit it, but you know it, you feel it) and deliberately send them to detentions ALL THE TIME and don't understand them or ME!! The girls in the office that share information secretly behind your back..................the people who lead you to think that they are your friend, then they stab you in the back soon as look at you (metaphorically speaking of course!!), the boss at the office who has chosen you to stab pins in whilst someone else is their pet?. Yea I know them, I have met them often.

Do Neurotypical women have as many meltdowns as some of us on the spectrum? I mean with alarming regularity...............a mate of mine looked at me in total disbelief as I threw my camera on the floor in disgust because to HER it wouldn't turn on...........to me it was the culmination of 48hrs of hell although at the time I didn't give that consideration!! Too late the camera broke and is now terminal. Have I done things like that before? Mmm yes actually I have. Do I enjoy having meltdowns? NOOOOO, they scare the daylights out of anyone watching them and ME! So why do I get punished if I have a meltdown? I don't choose to? Uuuuuggggg, and I have trouble sleeping, and I have certain food fads (just like the kids, but as commander in my kitchen I get to choose!lol), ooooh and I am inappropriate a lot of the time, oooh and I have a very poor working memory, oooooh and I find communication difficult even though I talk all the time and never sit still!! Do Neurotypical women have ALL of that and MORE!?

Looking at women I see some HUGE signs that someone may be on the spectrum SO WHY DO THE PROFESSIONALS STRUGGLE SO MUCH?? As some of you may know we call those on the spectrum Jelibeans and those not Marshmallows. It ain't rocket science! It takes a jelibean to make a jelibaby so WHY DOES IT ALWAYS HAVE TO BE THE DADS?? And why is it such big deal? Don't women want to ADMIT it? Nooo surely not. I am delighted to a) KNOW and b) Embrace all the gifts it gives me. Diagnosis is hit and miss, depending on who you see, WHO DIAGNOSES ADULT AUTISM? I can think of plenty who diagnose ASPERGERS! And that is mainly the guys!! Uggggg, how do the professionals expect WOMEN on the spectrum ( with an invisible communication and speech and language condition) to COMMUNICATE their childrens needs? DUH???

But hey it is the women who have to do the donkey work, we are the ones trawling from doctor to doctor, pyschologist to pyschiatrist to speech therapist to nutritionist to occupational therapist to teacher to aaaaaaaaaaghh HELL. We are the ones who have to recount the same story over and over often INFRONT of their child, we are the ones who have to liase, attend classes, meetings and provide evidence, we are the ones who have to parent these children so WHY IS NOONE LISTENING TO US! THE MUMS, THE WOMEN???? Hello.........................I am a woman, I am on the spectrum, I have a voice and I am a bit of a gobby cow! But I do know how many women FEEL on the spectrum.

I know the frustrations, the pit falls, the traps, the systems that NEVER work, I have cried oceans, sobbed till I sleep, banged my head on the wall (literally), pulled my hair out (literally). I have FOUGHT battles I never dreamt I would have to, to stay alive, to keep my children alive and safe.....................SO WHY AM I BLAMED? or thought of as a pain in the rear end? Because I have the intelligence to voice my concerns? Noooo don't be silly, they think I am mad!! How I wish I was then none of this mess would be real.

I know how difficult it is for a women on the spectrum, least of all a women alone with children on the spectrum. WOMEN, PARENTS, MOTHERS MATTER. We do. I am no shrinking violet, I am a nurse with a hint of medical knowlege (that's how doctors see us!), a bit of a nuiscance, a flagger up of issues..............a campaigner for a cause (no one realises my drive is my children).

But I see women on a daily basis, they pour it all out to me because I understand what they are going through. Often it is me telling them how they feel, it gives them a welcome rest from telling the story AGAIN. Sometimes they think I am spooky or perhaps a bit of a fortune teller! But it is just experience and listening to others struggles that makes me know how to smoothe a prickly hedgehog into a pussycat.

I have not met ONE mother yet who has not struggled, often alone, NOT ONE? Surely there are some happy stories out there where everything that could be done has be done? Anyone out there want to prove me wrong..................?

So what can we do to help improve the system that from where I am sat is broken? How do we even start?
Well by grouping together and demanding more information is a start..................where do we get the information? I can point you in that direction too! (pm me for details, it will blow your mind!) Who knows enough about what women have to go through and has witnessed it first hand? Yup folks, I can point you in that direction too!!

Some of you reading this may think, who the hell does she think she is? I quite understand But for some who know me and my posts, they will know I am quirky but hopefully do know my stuff and would NEVER lead anyone on for nothing! False promises!! I am familiar with those too!

Do women want to know about themselves? Do you? If you do, I know the answer!! And NO it is not a book, it is a real person who knows and is CREDIBLE!! anyone interested do let me know. WOMEN that is the key and so far there has been little written on the subject ...........................why do we always get forgotton?

I know by glancing back that there are typo's in this post and it may sound a bit dramatic, but I am leaving it as it is because THIS IS WHO I am! I am PASSIONATE about LISTENING TO WOMEN, MOTHERS, GRANDMOTHERS, SISTERS, CHILDREN,............................................WE ARE THE EXPERTS! I am at university at the moment doing a MEd, I am sosooooo frustrated because even the experts per se, don't know the intimate details of what WOMEN ON THE SPECTRUM GO THROUGH. You have to live it to know it, you can't teach it. You need to have observed it close hand, and no I don't mean in a consulting room, I mean at home, in the kitchen, the park, the supermarket, the walk to school.

And touching on the subject of sex? I see many women in my life and their honesty and frankness is simply wonderful. Without it I could not see a 'pattern', but now I do. Without touching on it too much, this is a family forum...................there are issues here that need discussing and exploring.

Thank you, feel better now. But I would be interested in hearing your opinions and critic. Many thanks in advance

hi- wow- long opener. i dont have the communication skills to reply today, but its very interesting, and i would point you towards a previous thread- Female Aspies? a different presentation? (google it) on here, which covered much of your ponits.
a.s certainly seems to be different in some women from some men, male a.s still being the blueprint for a type, which is not true!
from reading comments on the boards here, women def seem to 'appear' 'less' a.s than men- smiply because the 'image' of a.s is taken from that which generally applies more to men than women- so i'd say there is a diff betwene men and women with a.s anyway, and also- women are socialised and and pre-programmed to be quieter and more social etc etc than men.- see recent thread on whether a.s had more dominant male or female characteristics (overwhelming response-male).

a.s men are more commonly given to being high end IQ,a nd though anecdotally it is an anyway under diagnosed condition, and more so in women, there still appears to be a larger number of men than women with a.s.- from this bvasis, it seems a rational conclusion that it IS substantially different in women than in men.

there are also 'female' and 'adult' boards if you want to discuss more, but there is less traffic.

yea my opener was a bit pheewwwwwwww! Still recovering myself to be honest!!

Thank you sooo much for your reply and so quickly too. Yes I know there are other threads and the topics may have been done before BUT now I know someone who CAN COMMUNICATE everything that we know to EVERYONE out there, really simple, very easy and tender and sometimes quite funny! As an adult on the spectrum I do find the weirdest things funny!! And I think it helps to take the rip out of ourselves from time to time, I certainly don't mind admitting some of my behaviour if it helps others.

Just recovering actually from the last 48hrs..................my youngest son had Meningococcal Septicaemia when he was 3wks old (scariest experience of my life), he is now thankfully a strong strapping 13yr old however............. WHY did his meltdowns necessitate the Primary school (it was when he was 10) dragging him around the school by his ear? Sitting on him, armlocking him? Ooh yes right, he was diagnosed DAMP (ADHD/Dyspraxia) and therefore was just NAUGHTY!! Ugggggg. As a single parent the doctors wouldn't listen to me, no one would SO I went to see a PRIVATE neurologist who very quickly found out that my son has temporal lobe eplilepsy..............................and that his 'meltdowns' were actually SEIZURES!

He was also found to be Serine deficient, so we supplemented him with PS, as some of you will know, brilliant stuff, calms him down in 20 minutes and works similarly to Ritalin! (anyone wanting any info, just pm me, I can ramble for hours!!)..................SO WE RETURN TO OUR DOCTOR WITH EVERYTING IN WRITING ....................only to be refused the blood tests to keep an eye on levels?? The reason? Because we went private!! !! !! !! !! !! !! !! !! !! !! !!PULLS HAIR OUT AND SCREAMS!! ! So now 2yrs down the line when he is experiencing crippling headaches, does anyone listen?? NO! So the doctor at the local hospital REFUSES TO TAKE A CHILDS BLOOD FOR A RECOGNISED DEFICIENCY?????? YES!! !

Don't forget we have the NHS here and unless you get a NHS dx it doesn't count! But getting a NHS dX is similar to Rocking horse poo. SO I HAVE JUST COME BACK FROM LONDON..................13hrs on the train, and now we have the tests..........BUT NOONE WANTS TO HEAR THE RESULTS.

Where is Dad? Where is the support?? NOWHERE!! I am a single MUM/woman on welfare (takes it out of me looking after 5 children on the spectrum and the 30 that I care for voluntarily!!). Truth is that if you are a SINGLE PARENT ON BENEFIT IN THE UK..................AND you are flagging up these issues, YOU DON'T COUNT!!

Yet it is THE WOMEN that are screaming from the rooftops!! But only if there name is Oprah or Posh Spice DO THEY LISTEN. UUGGGGGGGGG, gets me soooo mad, can you tell!

I do know how we can make an impact there is someone who can help. I am looking to start a WOMENS only group, sorry guys we love you but a lot of the care and daily needs are met by the women generally! Please guys don't scream at me, this is not personal in any way

Gotta shoot out for a while to collect some MORE RESULTS! No rest eh!! Don't take much to get me on a soapbox!!

www.jelibean.com/

Jelibean, I understand your frustration and can relate to it. With all of that to contend with it's no wonder you would have frequent meltdowns. It's early in the morning here and I did not sleep well. My mind is not so sharp at the moment. Your post is so emotionally charged that I kind of feel electrified by it, so much of it hits home. I will try to respond more fully when I come to my senses. But I will say that it is easy to see how some women, after being ignored, rejected and mistreated time after time, can become militant, or appear militant, in their cause/attempt to open the eyes of those in authority who refuse to see what is so readily apparent when it comes to the issues of women on the spectrum. Just hang in there and try to stay calm and don't let those buggers drive you to desperation. You need your health to do all of those things that need to be done for yourself and your kids. (((((((((jelibean)))))))))

Thank you sooo much cosmic cat, thank you for understanding. Yep, there is a lot that happens in our lives, I am trying and winning the battle against meltdowns but it has been hard.

I see women being treated in one of three ways here in the UK

Sit quietly do nothing and watch carnage going on around you

Stand up and fight by yourself and get slaughtered

Stand up and fight with some backing, then get rejected and disrespected.

We can't win! But I think I know a way or rather a woman that can help! I am desperate to help WOMEN, we do NOT LIVE IN A MANS WORLD DO WE? It is equal isn't it?? 2009?? Why are we listening to so much that MEN say and DO? Women have wayyyy more communication equipment in out brains than men (yes there are academic papers that say so, happens at 8weeks gestation) sooo why doesn't ANYONE TAKE ANY NOTICE OF US??

Ugggggg. Don't worry cosmiccat, I am a tough old bird and REFUSE to let the buggers get me down. Sadly though there are many on the spectrum who are struggling and have not found their voice yet. I won't be bullied!! Noooo way! Maybe in a previous life I was a 'suffragette' and fighting for women back then.

One thing is for sure, nothing will shut me up!! I have ADHD with a massive H too!!

MWah for your concern xxx

I'm having a horrible time with my in-laws. I stopped working last year to heal and get myself together, and the women in my husband's family have been trying to put me in my place.

They're a bunch of fat, stupid cows who are dumping on me for being different. They literally sneer at me because I don't eat the sugar, refined flours, junk food and comfort food that they do. When we visit, and I have to eat their disgusting, ignorant food, my I.Q. drops 50 points then I get bloated, get rashes, depressed and sick. Then they talk about me and sneer at me.

They're jealous because they're fat, stupid and ignorant. They're fat, stupid and ignorant because of the junk food diet they eat and their social conditioning which means that they have to all fit in and form a mob group mind where no woman is different or thinks for herself.

I've tried to explain to them that I can't eat that kind of food, that I have to be on a special diet due to my Asperger Syndrome, and they just sneer at me more.

Finally, a couple of weeks ago, I blew up and sent emails that told them what I thought of them. I told them that I thought they were ignorant, disrespectful and unhealthy and that going to visit them was like some Yankee version of a Hee Haw episode where a bride has to eat the pork belly and fatback and grits that her husband's family eats all day. I told them that I didn't know anybody educated still ate white bread and Cheez Whiz.

I don't think we'll be visiting anymore.

If I had any idea how little respect and social mean-girl bashing I'd get as an Asperger woman who isn't working, I would never have wasted a moment trying to talk to that circle of pecking hens! I never even liked any of them, and yet I worked so hard to listen to them, respect their views and do everything they wanted. And then I found out that they were talking bad about me behind my back, as if I'm thin and have a good figure because I'm obsessed with my food and weight. Instead of the fact that I eat nutritious food and have an Asperger diet that means I don't eat their kind of junk food.

Last edited by ephemerella on 05 Mar 2009, 10:05 am, edited 1 time in total.

I am abruptly struck with tl;dr

ephemerella I completely know what you mean!! ! Women eh!!

But folks, I AS A WOMEN, MOTHER AND soon to be grandmother (groan! ) BEING ON THE SPECTRUM, know how horrible other women can be................yep sorry folks it is not just the men I moan about.

But how many of those women that are so rigid in their ways, bullying and overwhelming are actually on the spectrum themselves?? Ummmm scuse me, but I think there are MANY more than have been realised!! Interestingly a lot of 'jellybeans' (we call everyone on the spectrum jellybeans!) do SUGAR CRAVE and CARB CRAVE!! Why?? Mmm well I have been researching for ages and I think it is to do with CORTISOL. But hey that's a different subject that maybe I will come onto later if requested!!

Having NO consideration for others and their styles of life is called in my language ' lack of Theory of Mind', ie lack of empathy! And of course these women are not able to empathise with anyone else because they are sooooooo egocentric themselves. It all makes sense now. But many of these women have been through hell in their earlier lives, some still in hell so that makes sense too.

I see Autistic Spectrum Conditions as GENETIC. You can't CURE it, and actually I wouldn't want to. Many of us have gifts and skills that neurotypicals are unable to access so there are plenty of postitives too. BUT I do see the SYSTEM and many professionals EXCACERBATING autistic core symptoms because they DON'T UNDERSTAND!! Uggggggg! So on goes the vicious cycle and many women get trodden on, bullied and placed in a corner that is very uncomfortable. Luckily for me I have found an expert in Women!! Yes honestly and the sooner she is allowed to speak the better in my opinion.

My life is like a situation comedy, a drama, a film and maybe even an epic....................AND I BET A LOT OF OTHERS FEEL THE SAME!!

But drama and battles, tears and frustration is not good for ANYONE. The sooner WOMEN are listened to the better! To all those mums out there that find themselves pulling their hair out and banging their fragile heads against brick walls..............I empathise. But now it is down to us to do something about it.

The doctors don't know EVERYTHING and how many of those doctors are female, on the spectrum, single parents with children on the spectrum???

orngjce223, so sorry what is tl? blonde/senior moment

Hello ephemerella.

Maybe your in-laws want you to be bigger so they can see you. I have heard poor diet can effect eye-sight, and this is certainly the case when one progresses from wildly unhealthy to diabetic.

In the meantime, perhaps you should not talk to them or visit them unless you are in a coma. That way you are very unlikely to do or say anything that makes them feel stupid, and you will not have to hear anything they've got to say either. As an added bonus, the protocol for those in a coma is "Nil by Mouth", so that will take care of the food issue also.

pandd

I think that I would just accept that they are not very nice, probably oppositional defiance disorder, chips on shoulder and what they have been brought up with? Best to remain ahead of the game, don't take anything personally and then it won't hurt. I bet they are like that to everyone? Yuk. You are better than that so don't let it bother you hard as it may be, good luck.

Any other women with opinions out there!

Good grief, it's worse than I had guessed.

When the junk food starts over-flowing out your ears and accumulating on your shoulders, surely it's past time to quit eating it.

PRICELESS!! !! !! !! !! ROFPMSL!

tl;dr = too long, didn't read

Answering the call topic

My diet is not perfect, but then I restrict my calories; too much food makes me sleepy, and is expensive.

I read all your posts, Jelibean, but I am confused as to why the NHS would not accept a private dx from a reputable professional specializing in Spectrum Disorders, if I am understanding your words correctly.

I have received a lot of terrific assistance from my local Mental Health Association. I am not aware of what the UK has to offer, but it is worth a look.

Good morning sartreuse, and thanks for your reply.

Yes it is true, sadly if you get a private dx in the UK, it is viewed with suspicion. Actually although we did at first have to get ALL private dx's, we then had to go on and have them 'verified' by an NHS consultant.

But in this instance, we consulted a private Consultant Paediatric Neurologist. The son I am referring to was being dragged about a classroom by his headteacher and pinned down in arm locks and body locks. This was all taking place during an apparent meltdown. I had to remove him from school for a year until he started a new secondary school where he is very happy now. Sadly no one believed me when I said that his meltdowns were ANXIETY, TERROR and FRUSTRATION and should be treated as a 'seizure'.

As a nurse I decided to bite the bullet and take my son for a private consultation (luckily I have an insurance plan!). Sleep deprived EEG's showed quite clearly that actually on top of a Dx of DAMP, he had Temporal Lobe Epilepsy too. Further tests revealed a serine deficiency that requires a specialist blood sample. This test costs in the region of £100 and the local hospital has refused to do further levels, the argument that it is not necessary and serine deficiency does not exist!! !! Scuse moi?? There is plenty of empircal evidence out there

The way I see it here is as I said before, a mum on her own (many are) has 3 options

Option 1
Sit tight, know there is something different about your child, but no one seems to know so nothing is said, followed up or done. No support and often families in chaos just struggling. This can also end up with Child Protection as there has been no interventions to support the family and they end up in crisis.

Option 2
Ask questions, appear to be an over anxious mother who is flagging up issues unecessarily. These mums often are at the mercy of the professionals and end up feeling at fault. Some of these mums are further investigated at Child Protection level. Lock horns with the professionals at your peril.

Option 3
Ask questions, do research, study the subject and all that has been written, both popularist and academic. Arm yourself with the facts, don't take any messing from anyone and fight your own corner. Find support yourself and don't expect any knights in shining armour to rescue you or the kids.

I have been down all three paths, and eventually ended up on option 3. The professionals don't know what to do with me! I know too much and I am a bit on the mouthy side! Most of them groan when they see me, not for MY children but for other peoples! The beauty of it all is that I am on the spectrum and am totally open about it, whereas how many of the professionals admit to it? The parents identify with me, the doctors are flummoxed and the kids are loving the new interventions.

Autistic Spectrum conditions are not hard to spot! It is a pattern, albeit we are all DIFFERENT. There are strong patterns that when you spot them it is hard to miss! You know those 3D books where you have to squint your eyes to see the secret picture? Well that is how I feel, I can see the picture, having lived on the spectrum, loved on it, born children on it and been entranced by it, I know. It is just getting other folks to squint enough to see it too. The answers are all out there. It is not rocket science.

But hey who am I? Just a mum, single parent on welfare, stuggling to get through uni and trying to bring up children on the spectrum. To the professionals I am no one, not until I am qualified and then maybe they will listen to us? Who knows, but I hope so.

I am a pretty crazy kind of a gal, plenty of life experiences to draw on! If there is a hole out there, I have fallen down it, grabbed a lifeline and hauled myself out again, often with the help of a friendly neurotypical mate of mine, she happens to have a plentiful supply of lifelines for me to grab onto!!

See how I ramble!! Sorry But YES PRIVATE DX in the UK, stands for ? .................Buying a Dx! Simple as. We can't do right for doing wrong. Ask and you will be refused, seek and you will find, find and you will be rejected. In the UK, anyway, every child certainly doesn't matter, not from where I am sat