The autism thread

[Sporky]

The problem with the "we're all on the spectrum" thing is that, when it comes from someone who isn't autistic, it can feel very dismissive of just how hard work the world can be for those of us who are on the spectrum.

I don't mean this as antagonistic or critical; I know it's often meant as a sympathetic statement of solidarity, but on a bad day it does make me want to bite the person and run away because they cannot understand that the dishwasher not having run last night means I am now teetering on the rain-slick precipice of meltdown because I couldn't have my breakfast on my turtle plate. I am not actually bitey. I am 47 and am head of design for a systems integrator, but a bad day can be very bad for what look like trivial reasons.

Erm, and relax. Sorry.

[wjwren]

Sporky thanks for that. A great insight.

[Sporky]

I hope it didn't come across as spiky at anyone here.

And it wasn't just the plate. I have other plates I can use for breakfast. It was also my coffee pot (which I rinsed and it was fine), my wife's coffee mug (she doesn't mind having a different one, but the big red one is the one I make her morning coffee in), and the knife I use for slicing the tomatoes that go on my bagel (there are other knives that will do that just fine), and then both my squash glasses were in there too, so I had to get a spare from the store room, and then I'd run out of Ribena.

Any one or two is OK, but that many tiny disruptions together is not. It's like being a bottle of fizzy pop, and each thing is one little shake, but enough if them close together means there's going to be an explosion and a mess.

At work I run a team, and am in the management team of my group, and look after two of our biggest customers, and do more quotes than anyone else, and am quite grown-up almost all of the time. But other people's music in the office (I'm 95% home based, thankfully) means I can't think. Conversations 10m away are as big in my ears as the person next to me. I don't "get" chit-chat, so I'm constantly trying to work out if a conversation is important. Work socials are horrific because neither normal work rules nor normal social rules apply.

I am, I think, the sort of person who gets described as "high functioning", but that's because on the outside you can't see how much energy I'm expending trying not to flap my hands around or tell people off for making a whistling noise through their nose or work out if they meant what they said literally or if it was another weird figure of speech.

When my stress levels are low, my autism seems silly and irrelevant to me. When they're up, everything is much harder to deal with.

I'm very fortunate that my employer knows what I'm good at and what I'm not, and keros me in the former. My wife understands that if I've got headphones on and my hoodie up I am not grumpy or sulking, I'm just recharging. Others have it much worse, but I have it too, and it's different for all of us - that's the spectrum, it's not a linear scale with "a bit quirky" at one end, and "can't dress themselves or go to the toilet unaided" at the other. It's more like the galaxy, and each of us is a set of stars dotted around, only we're a different set at different times.

Edited by Sporky on Friday 2nd December 11:38

[sparkyhx]

Sporky said:

The problem with the "we're all on the spectrum" thing is that, when it comes from someone who isn't autistic, it can feel very dismissive of just how hard work the world can be for those of us who are on the spectrum.

I don't mean this as antagonistic or critical; I know it's often meant as a sympathetic statement of solidarity, but on a bad day it does make me want to bite the person and run away because they cannot understand that the dishwasher not having run last night means I am now teetering on the rain-slick precipice of meltdown because I couldn't have my breakfast on my turtle plate. I am not actually bitey. I am 47 and am head of design for a systems integrator, but a bad day can be very bad for what look like trivial reasons.

Erm, and relax. Sorry.

exactly, we are NOT all a little bit on the spectrum, i'm sorry, but as someone who works with autistic people you should know better, and just for clarity. I am trying to be critical.................. a bit. :-)

[plenty]

Great post Sporky. On the one hand the "we're all on the spectrum" thing is well intentioned and trying to normalise autistic characteristics. On the other hand it can muddy the waters. On Twitter there is a well-meaning trope of "you might be autistic if..." which suggests all manner of traits which can be presented by neurotypical people, for example introverts. It's all well meaning and designed to raise awareness, but it can be unhelpful as well.

It reminds me of how "OCD" has become a term of common parlance "oh, I'm so OCD..." which deprecates actual sufferers of clinical OCD.

[sparkyhx]

Sporky said:

The problem with the "we're all on the spectrum" thing is that, when it comes from someone who isn't autistic, it can feel very dismissive of just how hard work the world can be for those of us who are on the spectrum.

I don't mean this as antagonistic or critical; I know it's often meant as a sympathetic statement of solidarity, but on a bad day it does make me want to bite the person and run away because they cannot understand that the dishwasher not having run last night means I am now teetering on the rain-slick precipice of meltdown because I couldn't have my breakfast on my turtle plate. I am not actually bitey. I am 47 and am head of design for a systems integrator, but a bad day can be very bad for what look like trivial reasons.

Erm, and relax. Sorry.

By the way sporky - I've emailed this to my wife and her business partner as it is the best 'answer' to this comment we have ever seen. They are doing training today and tomorrow - they are going to use it in tomorrows course.

[Silvanus]

This is a really great thread, I neep to have a proper read through when I get a chance

[Sporky]

sparkyhx said:

By the way sporky - I've emailed this to my wife and her business partner as it is the best 'answer' to this comment we have ever seen. They are doing training today and tomorrow - they are going to use it in tomorrows course.

I am honoured. If that can help people then brilliant. It's really hard to try to explain this sort of thing, I think, partly because it involves recalling what led up to a meltdown, and that recall itself can be rather vivid.

Bit of "the curious incident" were really hard going, because they reminded me of what the unfiltered world is like.

Happy to help answer any questions as long as we all bear in mind that I'm only an expert on my own autism, not anyone else's.

[wiggy001]

It's been a manic week with a lot going on but I just wanted to say thanks to SparkyHD for your email - I have read it but need to find some headspace to read it again and respond.

I'm also pleased as the OP of this thread that others are finding it and finding it useful.

[sparkyhx]

wiggy001 said:

It's been a manic week with a lot going on but I just wanted to say thanks to SparkyHD for your email - I have read it but need to find some headspace to read it again and respond.

I'm also pleased as the OP of this thread that others are finding it and finding it useful.

Your blog was mentioned on our course today as an interesting view point from a fathers perspective as it’s unusual cos it’s often the mothers view.

[Heaveho]

Sporky said:

The problem with the "we're all on the spectrum" thing is that, when it comes from someone who isn't autistic, it can feel very dismissive of just how hard work the world can be for those of us who are on the spectrum.

I don't mean this as antagonistic or critical; I know it's often meant as a sympathetic statement of solidarity, but on a bad day it does make me want to bite the person and run away because they cannot understand that the dishwasher not having run last night means I am now teetering on the rain-slick precipice of meltdown because I couldn't have my breakfast on my turtle plate. I am not actually bitey. I am 47 and am head of design for a systems integrator, but a bad day can be very bad for what look like trivial reasons.

Erm, and relax. Sorry.

That is a perfect description of how my autistic friend would react to that situation. Anything that upsets the rhythm of her day has the potential to cause a deeply unsettled reaction. I've witnessed it on several occasions, and I find it distressing just to observe, and can empathise with it.

I have difficulties of my own with routine and focus, but not on that level. My wife likes to bombard me with questions and information as soon as I surface. I've recently become conscious that with hindsight I have been finding this a very difficult thing to cope with, and have realised that I really need space first thing to allow myself to start functioning.

The other thing I've had to accept is how ruined my day is if I get to work thinking I know what to expect and find it to be nothing of the kind. It's an extreme internal reaction and I have to force myself to behave the way others would expect when it happens. If I'm alone, I'll occasionally lose my temper in the most extreme way with an inanimate object that has somehow become the focus of my annoyance. It feels ridiculous to write that and read it back.

I've done online tests, the results from them would indicate that I'm not autistic, but I've recently become aware that I do display some traits. I'd like to get some help, the past year has been difficult for a variety of reasons. I've seen a counsellor which hasn't left me with any firm conclusions other than making me feel a bit narcissistic for even wondering if I needed it.

Reading through some of the above posts is enlightening.

[Heaveho]

Sporky said:

I hope it didn't come across as spiky at anyone here.

And it wasn't just the plate. I have other plates I can use for breakfast. It was also my coffee pot (which I rinsed and it was fine), my wife's coffee mug (she doesn't mind having a different one, but the big red one is the one I make her morning coffee in), and the knife I use for slicing the tomatoes that go on my bagel (there are other knives that will do that just fine), and then both my squash glasses were in there too, so I had to get a spare from the store room, and then I'd run out of Ribena.

Any one or two is OK, but that many tiny disruptions together is not. It's like being a bottle of fizzy pop, and each thing is one little shake, but enough if them close together means there's going to be an explosion and a mess.

At work I run a team, and am in the management team of my group, and look after two of our biggest customers, and do more quotes than anyone else, and am quite grown-up almost all of the time. But other people's music in the office (I'm 95% home based, thankfully) means I can't think. Conversations 10m away are as big in my ears as the person next to me. I don't "get" chit-chat, so I'm constantly trying to work out if a conversation is important. Work socials are horrific because neither normal work rules nor normal social rules apply.

I am, I think, the sort of person who gets described as "high functioning", but that's because on the outside you can't see how much energy I'm expending trying not to flap my hands around or tell people off for making a whistling noise through their nose or work out if they meant what they said literally or if it was another weird figure of speech.

When my stress levels are low, my autism seems silly and irrelevant to me. When they're up, everything is much harder to deal with.

I'm very fortunate that my employer knows what I'm good at and what I'm not, and keros me in the former. My wife understands that if I've got headphones on and my hoodie up I am not grumpy or sulking, I'm just recharging. Others have it much worse, but I have it too, and it's different for all of us - that's the spectrum, it's not a linear scale with "a bit quirky" at one end, and "can't dress themselves or go to the toilet unaided" at the other. It's more like the galaxy, and each of us is a set of stars dotted around, only we're a different set at different times.

Edited by Sporky on Friday 2nd December 11:38

This is another incredibly insightful post, extraordinarily similar to the way my friend reacts and behaves, and is helping me understand how difficult her life must be.

[Chromegrill]

Sporky said:

Great post, very insightful of how seemingly trivial things for the neurotypical person can cause stress that others would think was utterly disproportionate because they can't get inside your mind.

Absolutely - the neurodiverse equivalent of being invited to a cancer survivor's support group. Person next to you goes into graphic detail about their liver secondaries, difficulty managing their stoma and permanent nausea from chemo then you're asked how cancer has affected you. If your only experience is having a tiny basal cell carcinoma excised from your scalp that was never going to cause any mischief it must make you feel a bit of a fraud.

[Sporky]

I'm a bit concerned now that I might have given the impression that my life as an autistic chap is a never-ending saga of cruelty and meltdowns. It honestly isn't. That breakfast meltdown was unusual.

I do have habits, and I think they exist to let me have a bit of control over the world, but generally they serve me, not the other way around. I like my turtle plate for breakfast, but there are others that work fine. I managed to work in offices for most of my career somehow - but I'm much happier at home.

The most important thing for me is to be allowed to do the things that make the harder stuff manageable. I've been very fortunate in that regard; no-one minds me wearing earplugs in the office (I take them out for conversations), it's understood that I have fiddle toys with me all the time, I'm allowed to join most meetings via Teams or Zoom, if I have to go into London they let me avoid the rush hour (also I live far enough out that I'm pretty much guaranteed a seat). I get invited to work socials, but the assumption us that I won't go, and no-one pressures me.

With all that in place I am productive and happy and helpful. Most NTs have actually been perfectly accommodating when (for instance) I say that I don't shake hands.

I think I said before that I can't speak for anyone else. I'm going to break that a little; if you want the autistic people around you to he happy and productive, let them be "out". I still hide a lot of things, but being allowed to be quiet and fidgety, and having people accept that I'm friendly but not terribly sociable (ie you can ask me anything work related, but let someone else be your gossip-buddy), is hugely helpful.

Apologies if I'm hogging the thread a bit. It seems like some of my rambling is useful. I wonder if some of it might help people understand their autistic child or friend or colleague a bit, even though they aren't me.

[Derek Withers]

I have just discovered that a family friend, who ran a mental health charity, told my father that I was probably on the spectrum over 35 years ago. He denied that there was anything wrong with me and did nothing about it.

It must have been very obvious to him that I was completely different to my younger brother, what a difference that would have made to have known about it when I was a teen rather than to finally work it out for myself at over 50.

[Harry Flashman]

Watching this thread, as my elder daughter is displaying some signs. Mainly behavioural - extreme tantrums and emotional swings, pushing and shoving other children. She is 4 and has just started school (August baby). Hoping its just school teething stuff, but she has always been hypersensitive with big emotions, and as such a thread like this is invaluable for the observations and experiences of others.

Thank you all for your candour and honesty.

[solo2]

solo2 said:

My son, 14 later this year was diagnosed in February 2017 with Asperger's. He has always been a bit different and has become more noticeable as he has got older. Now I know what the signs were they were always there but his Primary school instead blamed his social skills on my parenting.

What I'm struggling with right now is trying to get my son an EHCP so that the school he goes to has some funding to help him but my local council Sutton will not give any child like him an EHCP. His education is being affected and instead of becoming a useful member of society and holding down a job when he is older is steadily moving into never being able to be employed and spending his life on benefits and having no self worth.

The real salt in the wounds here is that about a year ago a small independent school opened less than quarter of a mile from us (still within London Borough of Sutton) especially for kids with autism but you have to have an EHCP to get in. Guess what - not a single child who lives in Sutton goes there. My son would flourish there but I feel powerless to help him.

solo2 said:

kurt535 said:

solo2 said:

kurt535 said:

Im guessing you also have a ILP for him? WHat has the school said? Are they an academy or still cc?

I've had zero help or assistance since diagnosis. What's an ILP?

His school is an Academy

Ok, there's the problem. Academies are notorious for dragging their feet on this. My advice to you is to gather your evidence and email the school for a meeting with the SENCO officer to discuss your concerns.

Following the meeting, email them back with what was discussed. Note and log times dates and issues you had. DO NOT rely on telephone conversations that they can later on deny.

If your child is evidencing SEN/EBD issues then an Individual Learning Plan needs to be put in place by the school asap. The fact the school has not done this following a diagnosis is very wrong on their part and, potentially, illegal.

Ah right. I think this might be where he does not qualify - I'm not sure. He is doing well in classes and is in top sets for most things but he gets easily distracted but others and then it is hard to re-settle him and get him back to working. Lots of time is wasted in lessons because of this for him at least He seems to achieve good grades with minimal effort and they have let him slip by as he is meeting their targets. The school only seems to care about meeting the Government targets and not about the kids, they say they do but it's obvious they don't now he is my second child to go through this school What he is struggling with at school and this is where I feel and EHCP might help - and please feel free to correct me if I am wrong but he needs help with his social interaction and dealing with communicating with others whether that be another pupil or teacher.

A couple of weeks ago he was in a foul mood due to an altercation with other students that had just occurred during lesson changeover and the Assistant Head came around the corner and greeted my son asking in a throw away comment was he ok, the sort of comment most people accept as nothing. He absolutely let rip and verbally at the Assistant Head in front of other students whilst the guy was shocked by the verbal tirade that came his way and unaware of why my son was doing it. I got the customary phone call from the Assistant head a few hours later explaining what had occurred and could my son possibly go give him an apology as he could not be seen to speak to a member of staff like that . I do agree with that but the school are well aware my son is picked on on purpose to provoke a reaction by kids in all years and yet they have done very little about it. I had hoped some extra funding might mean he could have an adult escort him between classes and teach him how to deal with other children.

Maybe I'm off on the wrong tangent here but I just want my son to have the same education other have and be able to hold down a job in later life

Seeing as this thread popped up again and we are 3 years on from my first post on this thread I thought I would update on my son, now 17.

So his Secondary school let him down badly, the pandemic and online learning was not something a child with sensory issues could cope with and neither was returning to school wearing a facemask all the time. He basically had no GCSE education, the final 3 years of his life in school was spent at home uneducated, and up until this point whilst socially he was failing - academically he was a gifted child. Attendance Officer lost interest and would not help me compromise with the school to get him there. He was finally referred to Social Services and placed on a Child Protection register and the school forced to apply for the EHCP I had been asking for since he'd joined years before, there was no blame by Social Services directed toward me thankfully. I didn't know until this point that I could have instigated the EHCP, no one ever tells you this, it's like you are set up to fail! Anyhow, despite the opposition from the school they did apply and he was awarded an EHCP just a few weeks prior to sitting his GCSE's. Too little, too late in my books as it didn't help by that point. In the time it took to apply for that EHCP he had expressed his wish to jump in front of a train, and being autistic he even knew which station some 30 miles from home it would be. His keen interest in trains meant he knew the where the fastest of trains would run through a station to make a swift exit from this world for him - hearing that broke me. He cited the only reason he hadn't done that was he knew how much it would break me if he did. CAMHS are useless for a child on the spectrum, CBT with someone who cannot express themselves verbally is pointless and anti depressants on their own are not much help but the one thing CAMHS did do was to help dual enrol my child into a rehabilitation school. There was probably less than 15 kids of GCSE age and all had their own significant reasons for being there and not in main stream school so it was easier on him but by no means easy. He was driven there and back each day and in the 6 months he was there was able to leave with 3 GCSES's of a reasonable grade. 3 Is a disappointment on what he would have achieved in a main stream school of circa 10 GCSE's and his grades did also suffer but at least he has some exams to put on his CV.

Now we move on to the the next chapter in his life, 3 Colleges have let us down either in initially engaging with me and then disappearing off the face of the planet or advertising courses they are no longer running - so now he refuses to engage in any further education as they are useless so he is NEET. He is looking for a job but the combination of not much on his CV, no experience and not being 18 yet or having a driving licence means the very few interviews he has had have resulted in crushing disappointment. He can't conduct himself anyway in an interview, he has no clue how to act or what to say despite me trying to coach him - he just got frustrated and angry at me. No charity will help him apply for jobs until he is 18 which is end of next year so he just spends most days in his room watching endless cr@p on his iPad on playing computer games and applying for jobs, most of which never even acknowledge him - it's sole destroying for him. He's stopped saying he will kill himself and no professionals seem to care or can help so he realises that is pointless. Meanwhile I am scared that one day he will creep out the house early morning, go to that train station and carry out his threat. He is learning to drive so at least due to him having nothing else to do he is having around 8 hours a week on lessons and has his practical test in a few weeks time in the New Year.

He did look to do some volunteering but due to other health issues it was hard to find anything that was not shop or warehouse like work but he has found a little something with a local club that gets him out the house about twice a month for the day. Because he is out of education I have lost my Tax Credits and child benefit and he doesn't qualify for any Universal Credit so that puts more pressure on me as a Lone Parent, sorry but I despise the term Single Mum. I'm not some highly paid PH like Director, and get by on a modest salary but everyone is feeling the pinch these days financially.

So this is where we are at. No help and most likely no future employment for him. If his school had upheld their part his CV might have looked significantly better and by some miracle he may have found a nice little job - he's desperate to become a pilot but lack of exams means that is not likely now. I was reading an article the other week on LinkedIn that said a report released recently by ONS said that Autistic people are the least likely to be in work of any other disabled group, just 21.7% are in employment. Around 52.1% of all disabled people are in employment aged 16-64 years in the UK compared to 8 out 10 non disabled people, yet autistic people have a range of skills that are of benefit to society like attention to detail and technical skills that often pass neurotypical people by but because of the their social issues and the way they act they get overlooked.

Also earlier this year my now adult daughter privately funded a diagnosis of ASD, ADHD, Dyspraxia and Dyslexia. I said to the very same school my son went to that I thought she had at least Dyspraxia and was laughed at as she was achieving academically at the time Girls mask it far better than boys, my two kids are testament to that yet both have been let down by our local education over the years. Makes me feel like I failed them as a parent. Thankfully her masking and sheer determination has seen her complete 2 out of 3 years at Uni so far and she is doing well. Her Uni is supportive of her needs and she is flourishing and will be working within the NHS when she qualifies so at least she will be guaranteed a job.

Her eldest has an ASD diagnosis now at 4 and her youngest has just been referred by his nursery at 3 because he was displaying some of the same characteristics my eldest grandson was showing but the nursery wanted to check it was not learnt behaviour from his older brother. He is now displaying things that his older brother does not do so the referral has gone in.

Edited by solo2 on Wednesday 7th December 18:34

[Highway Star]

MrJuice said:

Yes, our EHCP application was declined first time. We appealed to tribunal with sendias help and tribunal agreed that son should be assessed

He was duly assessed and got quite a high band EHCP

Not sure how the school funded 25h of 1:1. Doesn't sound plausible

Thanks, mediation meeting next week to see if we can agree to avoid a tribunal.

His provision tracker shows 25h of support for his time in Y2 last year, not all was 1:1 but mostly was. They received funding from the LA for him for the past two years without an EHCP, but now one is required. That said, there was still a huge deficit to the school.

[Highway Star]

wiggy001 said:

I’m not sure if it will help or not but since starting this thread I have begun randomly blogging about my journey with my daughter’s autism so here’s my post describing the day we told her about her autism: autismdad

Thank you, will check it out.

[Highway Star]

Just to follow up on my continuing experience of getting an EHCP for my 8 year old son.

Following the LA's initial refusal to undertake a needs assessment, my son's school provided further information (ideally this should have been included as part of the initial application) and having taken advice from our local SENDIASS I provided a further letter clearly outlining why the LA had reached the wrong decision including references to relevant legal decisions (happy to share with anyone struggling with getting a EHC needs assessment). The day before the mediation session (as a precursor to going to tribunal) was due to take place, the LA changed their decision and agreed to undertake a needs assessment.

That has now taken place (including the Ed Psych report) and the LA has informed us that a draft plan will be issued within the next 10 days. Fingers crossed it will fund the provisions being put in place by his school and we'll have it in place soon.

Edited by Highway Star on Monday 13th February 15:36