Simon Baron-Cohen can stuff right off

[Kenickie]

That's really interesting about your research, and your reasoning makes a lot of sense. I think having an idea about reframing things more clearly shows that you're definitely near the end. ;)

[Smunder Woman]

I have to send my supervisors a full draft by next week, which I am achieving by dicking about on here

[Kenickie]

That sounds familiar. ;)

[Dutchie]

So, Joe got his ADD diagnosis today. The psychologist that had done his assessment straight away said that she would refer us to the paediatrician and that medicating would be a good idea, mainly to calm down the swirling storm in his head so that he can focus on his schoolwork. His IQ test also showed that his processing speed is rather low and someone else from the youth team had lent me an excellent book about that, Bright Kids Who Can't Keep Up. Most of the book was Joe to a T. Hoping the appointment with the paediatrician will be fairly soon so that he can start the new school year well.

Joe is also rather obsessive about his mobile phone use - if we don't physically remove him from his phone, I think he could quite happily spend 24 hours straight on it, gaming, (snap)chatting and watching TikTok videos. :ella: I asked the psychologist if that could be related to the ADD and she said that it absolutely was. So they suggested a number of alternatives and are going to connect Joe to a youth worker who can get him involved in all kinds of fun and sporting activities in our municipality with others his age.

All in all, we've still got a lot of work ahead of us but I'm pleased we've come this far now and we can take a few concrete steps now to actually help the kid. He has failed miserably at his first year of secondary school and will be repeating the year. At least then the subject matter won't be new to him so he can focus his energy more on learning how to study and how to concentrate.

[Ruby]

Right. Fellas. When we went out for lunch at a Persian café yesterday, the SAM got so mesmerised by the large turning kebab skewer that he completely zoned out. Then he told me about how there's a hill opposite some of his classrooms that gets a triangle shadow on it at certain times of the day, and then the triangle moves and he can't work out what causes it. "If there's a triangle on that hill, I'm not getting any work done that day!" I almost asked him if he likes watching fans.

I've always known he was a bit out of step. He has always spoken like a 40 year old He still eats with the hygiene of a toddler, can't stand up without falling over, has to be told if he smells and gets completely paralysed in certain social situations. His knowledge of flags and maps is unparalleled. I am WELL aware that a lot of this is typical of teenage boys but the contrast with the also-teenage N is becoming more obvious.

I've never followed it up or pushed it because it didn't seem to bother him. His friends (good naturedly) tease him about being "an autist" and he is 100% fine with it. He scores highly on those screener tests and, tbh, I think he's quite proud of it. However. I am slightly worried about him socially. He has a good group of friends at the moment but I really do think he maybe needs a roadmap for dealing with new situations and transitions. I am also unsure of how he is going to manage Alevels - if something isn't going to be perfect, he just shuts it down completely. I have talked to him about it, obviously, and he is a bit non-commital. His point of view is that being diagnosed with something won't change anything, and I think he's right but I also think he has challenges to come that he's not really aware of e.g. going to university, living alone etc.

Is it worth pursuing? I am not a professional - I don't actually know if he has autism, ADHD and/or some motor/sensory issues. Would all of this be looked at at the same time? Is a private diagnosis the only way to go with this or should I speak to the doctor and try to get a CAHMS referral? I think the waiting list here might be literal years ... Is this going to cost me a complete fortune and would there be actual benefits?

[Smunder Woman]

I would pursue (and am with Joe), but that's from my perspective of 20 years of mental health issues from not being diagnosed. I'm going for CAMHS because private is a fortune but might be tempted to go private if he was having problems. How does he feel about it? The diagnosis. Joe is quite happy to go "yeah, I've got ADHD,.soz" and wear his shitness with pride. Shitness said with affection, obviously :)) He doesn't seem too bothered about whether or not he gets help with it, and I'm not sure how forthcoming he'll actually be in any appointments. I've got his year head on the case, but he seems totally dismissive because Joe doesn't cause them any trouble.

[Ruby]

Right. He isn't having problems really at the moment. GCSEs has been a bit of a ride, but I know it is for most parents. The SAM is the same as Joe about diagnosis - he really doesn't care at all about being labelled but simultaneously doesn't see the point.

He isn't in school for much longer (2 weeks?) so I think it might be genuinely hard to get the school involved. Plus, he is academic and as long as he's getting the results, they don't give a shit and I highly doubt they will have noticed anything. He is just "head-down, get through the day" at school and he absolutely hates it.

Will this be a barrier, do you think?

[Beena]

If you've any doubts how SAM will cope, you need to pursue, Ruby.

It's likely Bambs' mental health issues are autism-related. She's always been at odds socially, but was such a funny little character no-one was overly concerned. It has become harder for her as she's grown though and she's been in and out of CAMHS for years. She's on a year out at the moment as A-levels were a disaster (she did fine grade-wise, but literally tore her hair out as she couldn't cope with the noise* of it all.)

She's due to start Uni in September this year and my heart is in my throat. The notion of needing a roadmap for new experiences and transitions is bang on. I've been trying to prepare her all year (we're currently driving 200 miles up the motorway on yet another reccy), but you can only do so much. The crux is this - I don't think a formal diagnosis would have made much difference to Bambs in herself, but with hindsight, I wish I'd pursued it for times like this. Getting support in place for the transitions would be so much easier if you can say 'there is this' rather than 'we think there is this'.

*It wasn't the stress of exams as much as how frantic everyone else was. She becomes overwhelmed if too much is going on.

[Smunder Woman]

Right. He isn't having problems really at the moment. GCSEs has been a bit of a ride, but I know it is for most parents. The SAM is the same as Joe about diagnosis - he really doesn't care at all about being labelled but simultaneously doesn't see the point.

He isn't in school for much longer (2 weeks?) so I think it might be genuinely hard to get the school involved. Plus, he is academic and as long as he's getting the results, they don't give a shit and I highly doubt they will have noticed anything. He is just "head-down, get through the day" at school and he absolutely hates it.

Will this be a barrier, do you think?

I think it might mean you need to do more explaining to get things started, but I'd hope everyone is getting more aware of different presentation and that by now. What you said about being academic and getting results is pretty much true for Joe too. He's in top Maths, so how can there be a problem?

I think it's worth pursuing to avoid future problems. Things got way harder for me to navigate once I left school and had to make my own way more. I am trying not to be all evangelical about diagnosis, but I don't know anyone who regrets knowing they're neurodivergent, even if they decide not to medicate ADHD, ask for accomodations for anything or whatever. I also think, based on totally anecdotal experience, that if you have strong suspicions (and aren't just a fanny looking for attention on FB), there's probably something there.

Also, my PhD focused on the sense of community when you find your people, and how that is transformational and, based on what I was told by people participating in my research, it makes a massive difference to know where you fit.

Sorry, this is mostly a ramble, but hopefully I've managed to get something useful in there...

[Ruby]

No. That is very useful. What things do you think I should mention at the doctor's?

[Edith Bacon]

Ruby - see if you can find a local, private clinic that is accredited to do NHS diagnoses under the Right To Choose scheme. There’s one in Lindley that has a relatively short waiting list - we are using it for E.

If you contact them they will send you the paperwork to give to your GP. As I understand it, the GP can’t refuse to fill out the referral because that would be tantamount to making a diagnosis, which they aren’t qualified to do.

I will PM you a link to the clinic. Unfortunately they don’t prescribe but I figured we would cross that bridge when we get a diagnosis. If I end up having to pay a psychiatrist to prescribe it will still be cheaper overall than paying for the diagnosis too and hopefully we could move to shared care, since the GP has filled out the referral paperwork.

[Ruby]

Ruby - see if you can find a local, private clinic that is accredited to do NHS diagnoses under the Right To Choose scheme. There’s one in Lindley that has a relatively short waiting list - we are using it for E.

If you contact them they will send you the paperwork to give to your GP. As I understand it, the GP can’t refuse to fill out the referral because that would be tantamount to making a diagnosis, which they aren’t qualified to do.

I will PM you a link to the clinic. Unfortunately they don’t prescribe but I figured we would cross that bridge when we get a diagnosis. If I end up having to pay a psychiatrist to prescribe it will still be cheaper overall than paying for the diagnosis too and hopefully we could move to shared care, since the GP has filled out the referral paperwork.

Thank you! That would be cool.

[Jet]

Then he told me about how there's a hill opposite some of his classrooms that gets a triangle shadow on it at certain times of the day, and then the triangle moves and he can't work out what causes it. "If there's a triangle on that hill, I'm not getting any work done that day!"

I love this :lol: I think I was the SAM at school. I'm more interested than I should be in if he ever finds out about the triangle :lol:

I can't help with the process over there although basically what we did was a private (L) or hospital based (S) assessment initially and the paed keeps it on file...with S we did it in pieces and the latter part was done by the school district but for L we paid outright for a full assessment privately, the school still did their own assessment for special education services but were able to use a lot of the assessment we'd paid for. But I agree with pushing to check it out, even if he doesn't seem worried about it right now. He is right, it won't change anything but I think it could help in later years with self acceptance, understanding oneself better in the big wide world, especially in the teens and early 20s. I often think about how helpful it would have been for me in my teens to understand myself and my quirks more than I did.

I often thought my S and the SAM had some quirks in common, I know we've talked in the past about the falling over and the inability to swing on a swing or ride a bike (I think). Once I read about sensory proprioception (before we knew about his ADHD and other processing stuff) things made a lot more sense. And while I don't have major social concerns for him currently (like I do with L) I could see things cropping up later like lack of self awareness and his extreme reactions to certain triggers so I do think I'm very glad we pursued assessments (albeit doing so at the time for learning differences specifically), it's just pieces of the puzzle.

[Bat Macdui]

I think it's worth pursuing to avoid future problems. Things got way harder for me to navigate once I left school and had to make my own way more. I am trying not to be all evangelical about diagnosis, but I don't know anyone who regrets knowing they're neurodivergent, even if they decide not to medicate ADHD, ask for accomodations for anything or whatever. I also think, based on totally anecdotal experience, that if you have strong suspicions (and aren't just a fanny looking for attention on FB), there's probably something there.

This. Also, if you do it now, with him, that saves a world of pain when he gets over 18 and is at uni and you're trying to help him sort it at one remove and can't unilaterally act for him, like my sister and E now.

[Duophonic]

Yep, this was me with Mini. She was formally diagnosed at Uni and it didn't change anything, other than her wanting to constantly drop out as she was so demoralised with the process and her lecturer's attitude to her.

[Kenickie]

From the other side of uni stuff, all our processes revolve around evidence so it is really difficult when you want to support someone but they don't have a diagnosis (the same as schools I'd imagine), although there hopefully is more movement towards being a bit more proactive and putting things in place initially rather than making adjustments for individuals.

I also agree with it being really helpful to understand why you are the way. I read Furious Thing by Jenny Downham recently which is about a girl with ADHD and it was a real revelation to me if explaining why I found my teens so difficult.

[Smunder Woman]

No. That is very useful. What things do you think I should mention at the doctor's?

I've used the ADHD iceberg for Joe. It's not perfect, but it at least goes beyond the "ADHD means a disruptive boy" kind of thing. It also helped that I could compare to my own experience, which doesn't help you much! I think I would make a list of what is concerning you and why (I think it's valid to say that you have friends/internet weirdos who were diagnosed as adults and have learned from them). Probably tell them you're looking to avoid general/mental health issues later, rather than reacting to a massive problem right now. Tbh, I think a lot depends on your luck and the doctor you're speaking to, so be prepared to be Very Firm :))

I used my diagnosis to score myself a single office last week

[Ruby]

I found a list of spectrum-type behaviours online and used that, and my general work experience, to compile a list. I've made him sound like a total balloon. But I thought it would be helpful to have in my head.

Screenshot_20220530-192337.png

I had to change one because it originally said, "dislike of change" and he said, "well, I don't think that's accurate because I would enjoy change at a societal level, I just don't like change in my personal circumstances". OK, then...

Also, if you do it now, with him, that saves a world of pain when he gets over 18 and is at uni and you're trying to help him sort it at one remove and can't unilaterally act for him, like my sister and E now.

Well. This has pushed me really because my middle nephew (the absolute dickhead ) clearly has significant ADHD but absolutely refuses to do anything about it and, since he is now 19, my sister can't make him.

[Ruby]

I love this :lol: I think I was the SAM at school. I'm more interested than I should be in if he ever finds out about the triangle :lol:

News just in : he thinks it might be the shadow of a digger.

[Smunder Woman]

The worst bit is that you need to tell them the worst case scenario of everything. It's grim. Do not give them any inkling of an excuse to send you away :))