Simon Baron-Cohen can stuff right off

[Estrella]

Good luck to E.

I’ve not posted on this thread before but have been reading. It’s very interesting as I get my head around things. J has been diagnosed as ADHD, and we are doing an ADOS assessment next month. The only driving factor behind this is to ensure that he gets the support he needs as he moves to high school (which I’m very worried about!)

[Froozy]

How have you gotten on with the assessment, Est?

Can anyone recommend somewhere to get melatonin online? D doesn’t sleep well but hasn’t been diagnosed with anything so I doubt he’d get a prescription from the GP. There are lots of google results but I’m wary of getting sugar tablets dressed up to look like the real thing.

[Estrella]

IHerb sells melatonin. J has a prescription for it but I buy it from iHerb as it’s cheaper that way. They definitely work.

We did the assessment. She said he’s borderline ASD but we haven’t gone for full diagnosis. Got an appointment with his paed next week so will discuss then.

ETA - these are the ones I buy.

[Squirrel]

How have you gotten on with the assessment, Est?

Can anyone recommend somewhere to get melatonin online? D doesn’t sleep well but hasn’t been diagnosed with anything so I doubt he’d get a prescription from the GP. There are lots of google results but I’m wary of getting sugar tablets dressed up to look like the real thing.

Yumi nutrition or Biovea. With the Yumi site you have to change the location to USA but then can buy them as normal and it is UK shipping. .

[Froozy]

Thank you and good luck with the appointment next week.

[Lily]

How have you gotten on with the assessment, Est?

Can anyone recommend somewhere to get melatonin online? D doesn’t sleep well but hasn’t been diagnosed with anything so I doubt he’d get a prescription from the GP. There are lots of google results but I’m wary of getting sugar tablets dressed up to look like the real thing.

Have you tried him on ZMA? It has made such a huge difference to me.

[Froozy]

Thanks Squirrel - I think we posted at the same time.

He's tried magnesium on its own to no effect, Lily, but I have some ZMA now so I might throw some of them at him tonight. I've floated the melatonin idea to him so waiting for a decision for that.

[Lily]

It can take a couple of weeks - and some very lucid dreams! - to take effect. Take 3 about 40 minutes before bed and avoid dairy. (Sorry if you already know this)

[Cerise]

I will at some point reread this thread but, I’m the meantime, please recap how diagnosis and treatment has helped you.

I’ve known this about myself for a long time but I really think I need to face up to it and see if I can help myself.

ETA: I’m talking about ADHD here and now think I might have the wrong thread!

[Smunder Woman]

It works for that too :))

In short, I am no longer quite as mental as my mind is quiet(er), I don't spend stupid amounts of money for a dopamine hit, and I'm generally kinder to myself about being a bit weird. There's been a huge mental health benefit.

The Swede also has ADHD, and I'm positive Joe does (but he doesn't want to get assessed), so this house is full of what we call monkey brains. Being aware of this makes our collective nonsense much easier to live with, as we know the reasons behind why we're all slightly chaotic and forgetful.

[Cosmopolitan]

I had a big thread a whole ago. And it's made me much more at peace with what I see as my tendencies to do stupid stuff - overspending, overeating, getting overwhelmed, meltdowns, anxiety. I was furious at first that it took me until my 40s to get diagnosed when I am so textbook adhd. Meds have made a huge difference, I've actually been able to build some positive habits (with support) and go to university for the first time.

[Smunder Woman]

I've been medicated for about two years now, and finally making peace with the fact I also need to build better habits. It made such a difference that I was happy with the difference the meds made, and didn't bother doing more

[Ruby]

I'm pretty sure I have ADHD tbh. I just can't be arsed to tackle it. Bats once suggested a book about it, which I downloaded, read the first chapter and recognised myself on every page. Then I lost my Kindle.

I saw this thread and thought I should update on the SAM. If anyone is umming and awing about having their child diagnosed then I heartily recommend it before they are 16. It's a nightmare.

There is literally no diagnosis pathway in my area. CAMHS won't look at him over the age of 16 unless he is referred by an education provider. The education provider won't refer unless it's come via the GP. The GP insists it's the local authority adult services who deal with it. (It's not) He doesn't yet meet the adult diagnosis age, which is ridiculous because even if I got him onto the childhood pathway, he would age out of the service before he got to the top of the waiting list. If I ever query it, people send me the same weird flowchart that doesn't explain the pathways at all.

I've tapped up all my education contacts - and some ed psych ones - and I still can't get any referrals via the NHS. So I have gone privately and it is costing £1300. I feel 'vulgar' putting the cost here but I thought I should give other people an idea. Also this is relatively cheap and there are weirdly dodgy services that are charging as much as £4000/£5000.

Private (reputable) services were really difficult to source. Lots of them have closed their books and have more business than they can handle because the NHS has ground to a halt. Some are just randos who are calling themselves psychologists and aren't registered with any professional bodies etc. It's a minefield. I got a recommendation for the assessment provider from a local autism charity (via Batso, thank you) - the Dr is a clinical psychologist and she works within the NHS normally. The assessment and report are all 'gold standard' so should be accepted by education settings and doctors etc.

We are in the middle of the assessment at the moment. He spent an hour and a half talking to the psychologist without me there and I now have to have a meeting with her about his development. I feel weird about it because I have paid - if he's diagnosed, I will feel like I've bought an inauthentic diagnosis and if he isn't diagnosed I will feel ripped off. :lol:

[Cerise]

Ugh, I’m sorry it’s so difficult, Ruby. What book did Bats tell you to read? And, thanks Cos, I found your thread after actually searching ADHD. :))

Thankfully we have private medical insurance via R’s work. I’ve left it because I didn’t really know what a diagnosis would achieve but I’ve had some terrible days recently that I really think I need to get something done.

I don’t think I’m hugely impulsive - I’m almost the opposite. I get utterly paralysed by decisions and avoid, avoid, avoid. I can’t even pull myself together enough to get business cards printed, for example, because there are too many options. And now I’m running my own business, there’s so much swirling round in my head all the time, it’s hard to grab one thing to deal with so I just have a little cry instead. I struggle to finish stuff because I get bored and, although I quite enjoy pairing socks (think that was on the other thread), I’ll put them on the bed rather than complete the job and put them in the drawer. I do try to chant to myself to “complete the circle” which I learnt here. :)) I tune out when people are talking to me and struggle to remember things (many key moments here, for example, are a complete mystery to me!). I work from lists all the time, even small things like “Empty dishwasher” or “Message Helen”.

I have bought Atomic Habits but it’s sitting unread. :))

[Luce]

Ruby, that is very interesting, thank you. I’ve been avoiding this subject in my head for years. But ever since my sister and nephew have been diagnosed, it is all spiralling.

I’m basically dithering about getting me and the boys tested. I’ve almost made my peace that I’m autistic (I have a long rant/theory about how In neurodivergent siblings, one is adhd and one is autistic :)) ) and am reasonably certain that F is ADHD and Theo is autistic.

I’m feeling equally conflicted about paying for a diagnosis. But I can’t even pick up the phone for a doctors appointment, the idea of fighting with gps and CAMHS just feels like such a non starter. I can’t work out if there is any point or if we need it and I’m hugely bothered by looking like I’m jumping on the neurodivergent trend.

I don’t feel any of us would benefit from medication other than F and I’ve been having counselling for the last year which has really brought up stuff from living with my sister as an undiagnosed person and how much she struggled and how much my parents struggled (they basically did everything that we’d now know as not helpful and it has affected both me and L hugely) and how that has all made me a little bit mental. And how the whole time I was struggling too but couldn’t say and became the exact opposite to my sister in every way. The queen of masking. I’ve even, laughably, made a career out of being ‘organised’ :lol: I’ve been hiding my real self from everyone but T for years and I’ve gained so much peace from just learning that. A proper diagnosis for me would be just about bringing more peace but maybe this is enough.

With the kids though, I just can’t decide if I’m hindering them by not pushing it forward. I’ve no idea how we’ll get F through his exams. Theo will be like me and will be fine with that aspect, but I wonder at what cost.

I’ve been meaning to pm Bats and Smund about this for about 2 years now but couldn’t bring myself to find the words to apologies for just jumping on the back of other peoples’ woes.

[Luce]

Oh, I’m also still discovering new things each day that might not be my own unique personality and might just be the autistic brain that I’ve inherited. My biggest stumbling block has been empathy because I was one of those who though autism looked like a robotic non empathetic person. And yet I’m drowning in empathy like it is a compulsion. I can’t switch it off, it isn’t a I’m-such-a-caring-person thing. I’d switch it off in a heartbeat. This has been my biggest neurodivergent revelation.

[Cosmopolitan]

I think that self-diagnosis is fairly valid here to be honest, most adhd people feel like massive frauds about everything, so actually getting an appointment for a diagnosis is a huge battle. Noone wants to have adhd, there might be some good things about it but the negatives are very difficult to deal with.

My private medical doesn't cover adhd diagnosises Cerise, so you may want to check on that. What they will do is do the adhd tests to rule it out in the case of anxiety or severe mental health issues. and then you need to find a prescriber (I do recommend my psychiatrist but he is a perfect example of someone who is super smart, a bit autistic and doesn't exactly have bedside manners )

Ruby, your story is the same as my boss, his 17 year old has just started medication and it was a full battle to find a pathway and he gave up and went private too. Absolutely a nightmare. Get your kids diagnosed ASAP.

I'm also totally unable to make decisions Cerise. The swirling thoughts is too much. I think Dr Barkley has some good videos on YouTube. I find Additude magazine useful and interesting (a bit americanised)

[Cosmopolitan]

And Luce, you make a good point, learning about how different people experience nuerodivergence is amazing. I always thought I had little empathy but actually I just can't read facial expressions very well.
And things like PDA and my favourite Rejection Sensitivity Disorder. Bizarrely medication helps with these as well. It's not just to help you focus. It's stopped a lot of over eating and overwhelm behaviours. And I retain information better, but more importantly I can use it. So I actually think medication is worth trying.
But there are lots of things you can do to support yourself better - calming the over-excitable nervous system is really helpful, yoga is super soothing, breathwork has actually helped a lot, managing stress is good. I always used to think this was an impossible task but actually there is a lot more stuff out there that works.

[Luce]

Yes to the PDA - understanding that that is something other people experience and that it has a name (and how it is the biggest cause of problems for both F and I) has made the biggest difference in our family life. I could never explain the rage I felt if someone thanked me for doing something that I had no choice in doing! :lol: Recognising that in F has changed everything we do with him and our relationship has improved massively.

Walking is my thing. I do about 2/3 miles a day so not huge and usually quite a slow amble but it is every day and I can stomp out of the house and return all zen. Luckily, the dog is onboard too.

[Cosmopolitan]

Oh yes! Walking has been amazing, time outdoors, especially in nature has been revolutionary