Simon Baron-Cohen can stuff right off

[Smunder Woman]

Yes, what Bats says. There isn't one way of defining all people, so there's not one way of defining all autistic people. One of the main issues is that there's still the preconception of autism = Rainman and, really, it's just a part of me, in the way that I'm tall, and have blue eyes, and so on. I think and perceive differently to what is accepted by society as being the norm, and that means that the norm is wrong, not that I need a definition. The important bit of the article, as Bats says, is helping to tackle the stereotypes, not the science of a spectrum. I think it's pretty obvious what the writer is getting at.

[Figaro]

Ok, I was only asking, as I found it interesting but quite confusing and not that obvious. Perhaps I am interpreting what she says too literally.

[Loralei]

We've decided to follow up a diagnosis for Berty. I bought the children a stack of books to read on holiday, including one told from the perspective of an autistic girl, and Berty came down to breakfast one morning, slapped the book on the table and said, "So, I'm pretty sure I'm autistic." :lol: We all had a chat about autistic traits, how we all have them (and the children thoroughly enjoyed listing my and P's shortcomings and asking if they counted :verm: :)) ) and at what point they make you an autistic person; I said I'm still learning but I think it's when, added together, they mean you need people to be understanding/flexible to help you do everyday stuff.

She's keen to investigate more, plus she is also starting to feel different to her peers. I'm also aware secondary school is looming (in 2 years) and as more is expected of her in terms of independent learning she's beginning to struggle with non-specific instructions and working quickly enough. All of these things can be addressed with awareness and some really simple adjustments (e.g. she works well with sand timers but in Y3 they decided she was 'too old' to need them), so the question "what would be gained from a diagnosis?" has quickly gone from 'very little' to 'a great deal'. Plus, I have been following Bats around Twitter and the number of people with ASD/ADHD explaining how much diagnosis meant to them/how hard it was before/how their mental health suffered because of a lack of understanding (including their own) has had a real impact. Berty is ace, she doesn't need to change, but the world in which she lives can shift up a bit to make room.

I'm fairly confident she is on the spectrum; she ticks all the boxes except for the special interests, but I am expecting some resistance from the school as she is SO good at masking. The few friends I've spoken to have reacted with complete disbelief except for one who has a daughter (T, now 15) who is so much like Berty (they began the diagnostic process but T got sick of it and said they all know she's on the spectrum and she doesn't need proof) and the mum of Berty's BFF, who is having the same thoughts about her son (BFF's twin), so we've done a lot of note comparing. I'm going to ask for a meeting with her teacher and the SENCO next week, to gauge their level of agreement/support and then I guess I start with the GP?

[Bat Macdui]

and Berty came down to breakfast one morning, slapped the book on the table and said, "So, I'm pretty sure I'm autistic." :lol:

I really hope she followed that up with a piercing stare and 'what you going to do about it'. :)) And I for one am enormously pleased to be welcoming Berty to our ranks. :)) On a more serious note, I do think adolescence is where it does have the potential to all go utterly kablooey so a diagnosis now and hopefully some form of follow on support (though you may not get this on the NHS) is such a good idea.

Did you get that Jessica Hewitson book I recommended ages ago? [url=https://www.amazon.co.uk/dp/B075WX3T2Q/ ... TF8&btkr=1] How to raise a happy autistic child[/ur]. Laura James supported the writing (Laura James ) and though I've not read it, I know it's hugely recommended by people whose opinions I trust and also that it's got lots of good practical information about pathways for diagnosis and SEN etc.

I don't know much about the diagnosis pathway for children, but under the Autism Act 2010 each local authority area has to have one and publish it, so before you go to the GP it's a good idea to look it up so you know what's supposed to happen next. I know so may people who've been referred wrongly because GPs send them in the wrong direction (adult and child). Smun can probably help with what actually happens. But also, remember if anyone mentions the Empathy Test the correct response is 'Simon Baron-Cohen is a massive cock'. :))

Good luck. :))

[olive]

Berty came down to breakfast one morning, slapped the book on the table and said, "So, I'm pretty sure I'm autistic." :lol:

From what I’ve read about her on here this seems to be a very Berty type of response. :))

I think the fact she is able to identify so strongly with an autistic personality and wants to explore this is really positive.

We haven’t dealt with autism but there were plenty of people queuing up to tell me that T’s behaviours were ‘normal for a boy’ and there was nothing wrong with him. :ella: He’s incredibly articulate and sporty so it was just assumed he’s much more capable than he is and therefore lazy and unmotivated.

Our first visit to the GP was dismissed out of hand (I wasn’t on board at this stage anyway) as T’s Y1 teacher suggested it so I went along to prove her wrong. The GP wanted a solid recommendation from the school that T had grounds to be assessed so I’d probably work on getting SENCO onboard first. No harm in seeing the GP to understand what the process is to try and get the ball rolling anyway given how long it’s likely to take.

We opted for the private assessment route due to our upcoming move so don’t know much beyond the process than that.

I would say having the diagnosis has helped T especially in how we deal with him and ask for help from others; be it at school, activities, friends etc. It’s been positive for T as well as he doesn’t automatically assume he’s naturally shit at things he can’t pick up quickly and that he just needs longer to figure it out and might need to work harder or differently. Of course he tries to use it as a get out of jail free card too.

His ADHD diagnosis a year ago made so much sense, especially when we’ve been unable to get a handle on his dyspraxia. It explained why he was so behind on his fine motor skills and why Occupational therapy wasn’t working. He just doesn’t have the capacity to deal with the dyspraxia because of the ADHD and vice versa and it’s important for him and every around him to know this.

[Bat Macdui]

That does sound really positive, olive. For T and for you as a family. I got my ADHD diagnosis and meds this summer and I am absolutely, utterly gobsmacked at the difference they have made. People kept saying meds were life changing and I was all like 'yeah. whatever, hyperbole' but I can function now in a way I have never, ever been able to do before. It's been utterly eye opening, I spent the first week going YOU MEAN EVERYONE ELSE THINKS THIS SLOWLY ALL THE FUCKING TIME????????

[Bat Macdui]

Also, Lora, I am pretty sure there's a few good groups (parent, child, teenager) in your neck of the woods. Remind me when I'm back and I'll try and find them and send you links.

[olive]

That does sound really positive, olive. For T and for you as a family. I got my ADHD diagnosis and meds this summer and I am absolutely, utterly gobsmacked at the difference they have made. People kept saying meds were life changing and I was all like 'yeah. whatever, hyperbole' but I can function now in a way I have never, ever been able to do before. It's been utterly eye opening, I spent the first week going YOU MEAN EVERYONE ELSE THINKS THIS SLOWLY ALL THE FUCKING TIME????????

Interesting! I’ve taken the plunge and set up a meeting with T’s doctor next week to discuss putting him on medication. I feel like I can’t even teach him the life skills he needs to cope on a day to day basis.

I remember you saying you were going look into an ADHD assessment! I’m glad they’re working so well. Have you had any side effects?

[Bat Macdui]

It's not that you can't teach him the life skills, it's that he can't put them into effect because his brain is going too fast to hold them and his short term memory is probably garbage, with an added big chunk of, as a result of this, it is nearly impossible to see cause and effect. :)) Because it is easy to understand, intellectually, that the consequences of not doing my homework is a bollocking, but impossible to emotionally assimilate that, because the bollocking is in the future and in ADHD, everything is NOW.

I really think ADHD is a lot like autism, in that the diagnostic criteria and descriptions are all based on what is visible from the outside and doesn't take that much account of what's going on inside.

And, it's really hard for me to do this without sounding utterly evangelical, and I know you're sensible enough to understand where I'm coming from BUT the absolute, utter difference is amazing. I have slowed down enough to think and to focus and the really, really big part for me is that it levels the emotions out. I don't get the massive spikes anymore and it's only with the drugs that I managed to realise my whole life has had a psychedelic backdrop of massive, screaming anxiety and overwhelm pretty much constantly. I don't have to fight myself to get the most basic things done, like chopping a vegetable or leaving the house. I honestly think that if you've a child in the education system then medication is giving them a fighting chance.

Anyway, that's not what you asked. :)) I get quite a dry mouth, and I don't get hungry. I have to schedule food, or I get to 2pm and wonder why I've gone a bit whizzy headed. The first week I got massive fatigue at lunchtime then couldn't sleep at night, but that's worn off now. Sleeping is still a bit hit and miss, but it's been hit and miss my whole life, so I can live with that.

My psychiatrist recommends (this is a common recommendation) taking a break periodically, and I will probably just take them work days and have a break at weekend. I'm on 54mg of Xaggitin daily, with a'booster' immediate release for afternoons when I flag a bit. I know with kids they recommend a break at weekends as there's a possible impact on growing.

There's a good video I found somewhere about how stimulants work on people with ADHD, I'll try an find it for you.

[Bat Macdui]

Video

[Squirrel]

I need to have a proper read of all this. We’re approaching a diagnosis for G of high functioning autism. In the link above, the bit about it not being “mild” really struck a chord with me. That’s how so many people react to G, yet he is very definitely a child who can’t cope with day to day life. Today I’ve had G’s OT telling us that he will likely need a specialist secondary school, and someone else who knows G very well telling me the opposite . I’ve had little sleep and a couple of beers on an empty stomach so sorry for the waffle, and thank you for all the useful content and discussion.

[Loralei]

and Berty came down to breakfast one morning, slapped the book on the table and said, "So, I'm pretty sure I'm autistic." :lol:

I really hope she followed that up with a piercing stare and 'what you going to do about it'. :))

Almost, but it was more of a challenge to disagree :)) Fortunately for her (us), we are on the same page but I am so glad she came to the conclusion as it means she's been involved in the decision making without us having to suggest to her that she consider it. I bought the Hewitson book immediately, thank you, and have read most of it but it is slow going as I am insisting P read it too, so we are reading a couple of chapters each so we can talk about it. I have massively changed my parenting style as a result of this (and other reading) and it's made a huge positive change for all of us. I have skipped a fair bit, such as the sections that deal with co-morbid learning difficulties or that focused on babies and toddlers, so I will go back and see what I missed with regards to initiating a diagnosis, and also look at our local diagnosis pathway, which I didn't know existed. It was Hewitson's assertion that the process usually takes at least a year that was the final kick up the bum, as I realise B will need extra support for the transition to secondary school. At the moment I don't think she needs anything that costs money, just some understanding and concessions like being allowed in a classroom if she is overloaded at break time, but I'm aware that might change as we all learn more (and I have a feeling B is beginning to mask less as she feels more understood, which is no doubt good for her mental health but may come as a bit of a shock to all of us as her masking has been so convenient for everyone else) . I have been meaning to get in touch to say thanks for the recommendation, and also that your Twitter connections are awesome.

I would say having the diagnosis has helped T especially in how we deal with him and ask for help from others; be it at school, activities, friends etc. It’s been positive for T as well as he doesn’t automatically assume he’s naturally shit at things he can’t pick up quickly and that he just needs longer to figure it out and might need to work harder or differently. Of course he tries to use it as a get out of jail free card too.

This is exactly what I am hoping for. B is already trying it on, too :lol: I figure there have to be some advantages, right? I'm so glad it's made a positive difference for T; it breaks my heart to think of these brilliant chaps thinking they are shit just because they don't approach things the same way as the majority. I think a couple of years ago I would have thought of if as something to fix, whereas now I see that her "quirks" (her word) are part of what make her her. I don't know if you've read Cerise's posts about deciding on medication for her J but if not they are worth a read.

The mixed messages must be frustrating, Squirrel. I too am only just sorting out the idea of 'high functioning' being wrongly conflated with 'mild'. I follow Black Girl, Lost Keys (@blkgirllostkeys) on Twitter and she talks a lot about how high functioning doesn't mean having it easy; her threads are a very easy, informative read if that might be your type of thing? (She has a diagnosis of ADHD, rather than ASD, but so much of what she and her followers say seems relevant to both.)

I'm really glad the ADHD diagnosis and meds have helped so much, Bats (<- Just be grateful it's only virtual!)

[Bat Macdui]

Last time I met bramblerose you could actually SEE her internal struggle trying not to hug me. :))

All of that post makes me feel all fuzzy inside. Diagnosis is a first step, but understanding how you work is so important in not measuring yourself against everyone else in a way that means you'll always come up short. Having parents who get that and can help you figure yourself out is brilliant.

[Cerise]

Olive has had an essay from me! :))

I’m glad you’ve had a positive experience, Bats. J only takes his on school days too although we have a quick release version if we have heavy homework to tackle at the weekend.

He’s just started secondary school and it seems to be going ok. There was a large organisational blip yesterday morning but we stayed calm and dealt with it and disaster was averted. I’ve just got in touch with the SEND department to check he’s on their system.

[Jet]

I’m saving that video, bats. Thanks for sharing.

I’m glad the medication is making such a difference for you. I think any decision about medication for S is a bit further down the line as I want to see how effective other changes are first.

[olive]

Poor Cerise has already had me bending her ear and firing 101 questions at her. :))

I don't get the massive spikes anymore and it's only with the drugs that I managed to realise my whole life has had a psychedelic backdrop of massive, screaming anxiety and overwhelm pretty much constantly. I don't have to fight myself to get the most basic things done, like chopping a vegetable or leaving the house. I honestly think that if you've a child in the education system then medication is giving them a fighting chance.

This has made me cry, you massive twat. (in my defence I am horribly hungover). I just can’t imagine being so overwhelmed, all of time by everything. I’m really pleased the drugs have worked out for you and thanks for sharing the side effects. That video is great!

I’m worried about T’s appetite and weight. He loves food so much but is massively underweight so I hope the impact is minimal.

Lora - what you said about seeing it as something to fix really resonates with me. I’d been seeing it like that too and now I’ve got my head round it all a bit more it’s become easier to deal with.

Today I’ve had G’s OT telling us that he will likely need a specialist secondary school, and someone else who knows G very well telling me the opposite .

The spectrum within the spectrum is a tough thing to navigate. I find myself going round and round circles on this stuff all the time.

Good luck, Jet! I found having the diagnosis alone really helped and S is young enough so you can take some time to get your head round everything. It’s a lot to take in.

[Loralei]

Poor Cerise has already had me bending her ear and firing 101 questions at her. :))

:)) I should have known, sorry. I was just struck by how much thought and care they put into the decision and how hard it was to make, largely because of uninformed prejudices. I had coffee with my friend yesterday (mum of 15yo T I mentioned before) and every time she used the word 'label' I had Smunder in my head saying

If I ever go to prison, it will be for killing someone who says "but I don't want to label him/her" :verm:

Thanks for saying that, Bats. I so desperately want to get it right for her. I realised very quickly that I should stop parenting through bribing, threatening or punishing. In the moment she couldn't give a fuck if I cancel Christmas, but give her 5 minutes space and she will not only apologise but punish herself by feeling terrible. (We still have the odd screen ban for spite/violence towards her family, until I find a better way of demonstrating that's a different level of unacceptable, but actually those incidents are far fewer now we have fewer awful battles of will). P is a bit more reluctant to 'let her get away with things' but he's been pretty stunned by the difference the small things have made (written routine for mornings, leaving her alone for a couple of minutes when we get a screeched "no" in reaponse to a request, rather than insisting) that he's getting on board.

[Smunder Woman]

I will come back and say more later, but Berty is ace :))

[Bat Macdui]

I'm sorry for making you cry, Olive. :)) I have loads to say so I might do it in chunks. Also, don't feel obliged to read it all, I just like pontificating off on what is now one of my specialist subjects. :)) I do think the weight loss/no hunger thing should be less of a Thing with an underweight boy compared to a 43 year old woman with a history of eating disorders, the patriarchy's crap about thin women shoved down her throat since birth and years of binge eating because of always wanting MORE NOW STUFF THINGS. Not least because as a child you are so much less in control, you eat what someone's made for you when they tell you to eat it. But obvs, worth keeping an eye on weight. I'm sure Cerise has covered that as well.

I really, really think the 'trying not to fix' is so important. Trying to live up to a series of things I just cannot is what's made life very very hard. Acknowledging that you (your child) will get to different achievements in different ways (or maybe not get there, and was it so important?) is so so helpful.

Also, I don't know if I've said this before, but since I've followed a lot of people with ADHD who were diagnosed back in the 90s when they were kids, I've understood a lot more about the stigma of medication. People who've been taking stimulants for ADHD since then say the dose and medication has improved enormously, and some of the stigma comes from those Daily Mail pieces about ZOMBIE CHILD and over medication of naughty boys. There were issues with over medication, but mostly, people who I now talk to how toss around names of drug brands and doses are so much happier with what their medication does and how they can use it - and have a modicum of control over it.

Anyway, one thing medication has made me realise, alongside the various things I've been processing since my autism diagnosis, is that I am totally fucking amazing. :)) I mean, yeah, there's been some genuine, actual horrible shit but I'm still here and I'm more or less functional. :)) How I did it I have no idea. This is what makes me so evangelical about labels and drugs and understanding. If you know yourself, that is so half the battle.

And I'm going full on sappy here. But a lot of people I talk to - a lot of late diagnosed and undiagnosed but definitely autistic and/or ADHD men and women in their 40s and older - they are lonely. Proper, horribly, no proper friends, no peer support lonely. They've been bullied, socially and at work for being different, they've never connected because they can't mask, or they can and they've got stuff subtly wrong and never been able to make a good connection with others. And I think a lot of the reason I've never really been lonely or felt ostracised or unaccepted (and god alone knows I've fucked up enough real life stuff) is because of here. I mean, I might get annoyed with you all wittering about moisturiser types sometimes, or cross about something random but you've all pretty much always been here and I KNOW if anything goes tits up you'll have my back. I cannot say enough how much that has helped. You're all rather fab.

[olive]

I'm sorry for making you cry, Olive. :)) I have loads to say so I might do it in chunks. Also, don't feel obliged to read it all, I just like pontificating off on what is now one of my specialist subjects. :))

S’alright. It doesn’t take much to set me off at the mo. :)) I love this topic and can listen and read about it for hours so even if no one else is, I am reading obsessively.

I agree that you are utterly fucking amazing and how any one comes out the other side without any/ much support is just incredible to me. T has educated and informed parents who are able to spent time and money to help him and it breaks my heart to think of those people who don’t or didn’t get that support.

The links between autism/ ADHD/ learning differences and poor mental health also terrify me. The propensity towards addiction and depression is probably what pushed me to at least try medication. T is generally a happy go lucky kid but I can see big cracks in his confidence already.

I’m glad you’ve had an outlet here, Bats even if a lot of us didn’t know it at the time!