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I'm not his greatest fan, but this is fascinating watching. Very honest and open about the issues, and a really good piece chatting to Paul Scholes about his son.
Ditto.
Agreed. I think Paddy’s wife also comes across well.
The genetic theory was interesting, though I can see why it's controversial.
Not something I have any family involvement with, beyond a cousin who was diagnosed at 18, but he's at the "eccentric genius" end of the scale, statistics being his thing. Our Scout group has quite a few kids with a diagnosis who we provide extra support for where necessary, and watching what some of them have achieved is really satisfying.
Very good programbh both of them seemed very open and honest.
That's twice he's spoilt my long-held view that he's a prat.
Think I'm going to change my view.
Very good programbh both of them seemed very open and honest.
That’s twice he’s spoilt my long-held view that he’s a prat.
Think I’m going to change my view.
Aye, pretty obvious there is a "real" Paddy and a "celeb" Paddy. Still not sure which one is on QoS
I will give this a watch. We have a lot of neurodiversity in our family and I've discovered aged 41 that I've almost certainly got autistic spectrum conditions mostly leaning towards ADD/ADHD. It's scary how accurately a list of adult ADD symptoms describes me. Waiting on the diagnosis process at the moment.
I used to think both ME and ADD were largely nonsense in my more ignorant/less compassionate younger years, serves me right as now I have both!
I saw that last night and some aspects of it resonated strongly with me, so I found an AQ test online and scored 42. (MrsP scored 9 and was not surprised at my result). Even allowing for some marginal answers that's still a fair way on the high side, but at 56 years old I've more or less accepted who/how I am so is there any point in taking it further?
It's noticeable that he's changed on Top Gear more than one would expect for a team gelling. Looks like the autism programme has shifted his approach to life as his understanding and acceptance has improved. He's making a good job of the hand he's been dealt.
I’ve more or less accepted who/how I am so is there any point in taking it further?
Very personal choice I would say. If it's not presenting you major problems in work/life/relationships etc then maybe not but probs worth at least talking to your doctor IMO.
For me it's more ADD which is potentially very effectively treated by medication but I don't think the same applies for autism so perhaps less point pursuing an official diagnosis? This is just my inexpert opinion obvs.
@thepureist
Do you have a link to the test you used?
RT
@RT
This is the one I did - have looked at others since and the questions & scoring are consistent.
https://embrace-autism.com/autism-spectrum-quotient/
Really enjoyed it, Paddy came across really well I thought.
@thepurist
Thanks. I have done a couple the same as you. The questions are the same mostly.
I'm getting this... answers a few questions. Raised more.
I think, I'm quite good at hiding traits. Explains a lot of school problems back in the 70's.
but at 56 years old I’ve more or less accepted who/how I am so is there any point in taking it further?
If you feel it would help further with self-knowledge or self-acceptance, then maybe.
Also if it has been or is likely to become an issue with work, it may be useful. It's covered by the Equality Act and employers must make reasonable adjustments.
Yes was interesting.
The thing about mimicking behaviour... Maybe I used to do that... sometimes find I do it unconsciously. Took the AQ test. A good proportion of the answers I wanted to answer as "sometimes" so never feel that confident in the result. But the result was very similar to the last time I took it I believe, borderline, 31.
Our children are too young to be diagnosed yet, but they could be similar result I expect or one might be higher. Guessing/suspecting.
33 here.
Somewhat ironically, I found some of the questions hard to answer. Like "I find it hard to do a thing" when I've never tried to do that thing so I don't know whether I'd find it hard or not.
Also, there's revisions to the test which I didn't notice until after I'd completed it. (Why not just update the bloody web page?)
... 35 with the updates.
I used to think both ME and ADD were largely nonsense in my more ignorant/less compassionate younger years, serves me right as now I have both!
Probably guilty of this in the past too, but I've learnt a lot in the last 10 years.
Have to say, some of his wife's comments resonated with me about feeling different and interacting with people differently, and her comments about it affecting her relationship with food but it not being an eating disorder made me instantly think of my eldest.
I may do the test later on....
Hmm, that test results ^^^ seem a little, well, perhaps they are trying to sell you something vibe about them...
As far as I understand it rather Baron-Cohen AQ scores interpretation are as follows:
0-10 = you have a low number of autistic traits.
11-22 = you have a average number of autistic traits (most men score about 17 and most women score about 15).
23-32 = you have an above average number of autistic traits.
33-50 = you have a very high number of autistic traits (most people with an autism spectrum condition score about 35).
And the rider that a high score is only an indication (not that you actually are...).
From memory my score was either 34 or 36.
I have discussed a diagnosis with my doctor (briefly) but there is insufficient mental health resource at present and when things are back up and running there’s an 18 month waiting list (apparently).
I’d like to go for a diagnosis (for a personal perspective; ie am I autistic or just weird) but would find it difficult to use a limited resource on something that wouldn’t significantly change my life (when there are others where MH treatment might have a more tangible outcome).
If there was a private way of undergoing the process I’d consider that though...
I have discussed a diagnosis with my doctor (briefly) but there is insufficient mental health resource at present
It's not a MH condition - though there are typically long waits for diagnosis (my experience is with children FWIW).
If there was a private way of undergoing the process
You can get a private diagnosis, the Autism.org.uk website has a handy directory..
https://www.autism.org.uk/directory
Yes caught a bit of the program, resonated with us.
I did that test ^. Scored 32, but I'm pretty sure I am to some extent anyway. Always felt like I did't quite fit most settings, but I do mask well I think, and have a large circle of friends etc. Not really convinced by those tests though.
My daughter almost certain is autistic, and after a long long wait, she finally has her proper AQ assessment next week at the hospital. But we're only doing it so she can get the support she might need, that wasn't available when we were young. She's bloody brilliant, very clever and creative.
My natural suspicion was that tests pushed by support organisations may be a little skewed, but I'm just cynical.
Curiosity got the better of me, Wikipedia says that Prof Baron Cohen is Borats cousin.
Our kids are a similar age to Paddy & Christine’s. Our 9 year old daughter has had struggles from day 1, with some quite severe anxiety disorder. It’s heartbreaking. This morning she screamed for an hour all because her leggings were uncomfortable. She can be late for school a couple of times a week. At school she comes across as a different person, she maintains healthy friendships and the teachers barely know her struggles because she masks so well. She’s knackered when she gets home.
We watched the documentary together and my partner and I related to everything Paddy & Christine said. Very brave of them to come across so openly.
grum, same age here and going through the same thing. My therapist 10 years ago was convinced I had ADHD, so I arranged an assessment with an NHS consultant. I didn't get a diagnosis. Talking with an ADHD friend recently convinced me that I have it (so many shared personality traits and relatable issues), so I tried again via the NHS and this time they wouldn't even see me. It's apparently very hard to get a diagnosis via the NHS, so I'll eventually (procrastinate much lol) go private and see if I can get one.
BTW, I believe the term 'Adult ADD' isn't really used any more; since it's a brain development disorder, you'll have had it all your life so it's not an 'adult' condition. ADHD is the catch-all term, including being non-hyperactive (my experience).
@paino that all sounds very familiar to us.
Daughter has major sensory issues, huge meltdowns, always a massive issue getting he ready. She can't touch things with her hands like towels etc.
At school she really does amazing considering, getting great results, but is exhausted by the masking.
We've battled for years to get through the system to get her support and get diagnosis. It started when she was 4/5 years old, she's 12 now. Only just earlier this year did we get an EHCP, so now the school actually take it seriously.
I would definitely push for an EHCP.
But everything you've said matches with our experiences.
We have learned difference approaches to help her, we spend a lot of time finding clothes that she's happy with, and adjusting routines/allocating much more time to things so there's no presssure on her to get get ready.
Very brave of them to come across so openly.
Not that it matters but Im pretty sure he would have been paid.
Yes it was a good program on many levels, firstly getting Autism out in the open and not some taboo subject.
My only gripe and I feel more than justified to have this opinion as a father to two boys with Autism and Adhd (12/14yrs) - in the real world try getting an appointment with CAMHS to be diagnosed or if you're really unlucky the school senco dept to actually help.
We have been lucky with both of our boys getting diagnosed, one has an EHCP the other not, his school refuses to support one, which causes us all a number of issues. We have now gone legal on the school which doesn't come cheap and causes many different levels of stress and anxiety for all of us.
Money or who you are should never come into getting a diagnosis or the help required...
It’s a difficult process when our daughter hides it so well. Essentially the NHS have deemed her ‘not severe enough’. Leaves us with no choice but to go private for a diagnosis. The school have been brilliant though. I do struggle with the ‘nip it in the bud’ view as her issue won’t go away, but instead needs managing carefully. Above all it’s her self esteem that I feel most strongly about.
Her circle of friends/parents also know of her masking, and they’re also amazing. Her best friend has got diabetes and did a presentation at school. We’re putting together something similar for my daughter to do so her classmates can distinguish between the physical attributes of diabetes and the less obvious traits of a person with an anxiety disorder.
Our daughters sound similar. The sensory issues she’s had have cost us thousands on pants alone!
@paino yes they sound similar indeed.
And no, it certainly cannot be nipped in the bud. They're just different. They should not have to change..
We talk quite frankly with her about it. It's absolutley fine to be different. We give her all the support she needs whilst we're with her, and really try and make her feel good about herself and build self confidence depite the difficulties. I'm quite certain she'll excel beyond her normal class mates academically.
But it does dominate everyday life for us, it's the first thing you consider is most situations. We were looking to move house 2019, and ended up moving to a different town to be closer to her beloved Grandma, for the extra support and comfort she gets from that. That left me with a 30 mile each way commute! But anything I can do for them to make it easier is all worth it!
And yes, a small fortune in pants!
I haven't watched the TV show in question (yet, my Mrs was watching it when I got back from a night ride last night) but I just wanted to say "me too" in reference to your experiences with your kids.
My middle daughter has sensory processing issues and seems to exhibit a number of autistic spectrum behaviors (I'm not sure if this is the right terminology so forgive me if I'm phrasing it poorly). Reading up online I think she fits well with Pathological Demand Avoidance (PDA) clustering of symptoms, but we don't have any kind of diagnosis. We're currently on a waiting list to get on a waiting list for diagnosis, having been bounced around between GP, school, pediatrician, etc, for a few years.
We're sort of lucky in that my daughter is just six, so still at primary school where support generally is quite good. She had a week off ill before autumn half term and hasn't been back since finding any clothes now intolerable (she wears pants and a blanket at home currently). That seems to have kicked us onto some kind of emergency list at school so the SENCO has been ramping up focus on us, and to be fair to her seems to be doing a good job. She is currently working on putting together the EHCP application so fingers crossed there.
It's such a difficult issue to really explain: even our close family will say things like "Oh, can't you just get her dressed?" or "Well, she can do it if she wants to" when she's managed after many hours and immense efforts on all fronts to put on sufficient clothing to e.g. go to her sister's birthday party.
As things stand right now she's not been outside much to speak of in about six weeks, and her world has shrunk immensely. And of course that has a knock-on effect on us as a family: there always has to be an adult at home, no chance of doing family outings. We do our best to work around it since we have two other girls who sometimes miss out through no fault of their own, but it's hard work.
Anyway, I'm not sure what I'm trying to say here other than you are not alone, and to wish you strength.
Some very familiar descriptions here from my experiences too. My eldest step-daughter has just received an ADD diagnosis at the age of 24. This was a private consultation, there was virtually no chance on the NHS. This has come after many years of struggle including some extremely volatile behaviour (violence towards family, self harm, suicidal thoughts) following meltdowns with a whole range of triggers. These include sensory triggers, demand based triggers, social stress/exhaustion from masking. A lot of these indicators also align with Pathological Demand Avoidance, which is what my wife and I believe should be a co-diagnosis really. We spent years hardly going on day trips or on holiday there were just too many potential triggers for it to be worth it really.
My wife also attended CAMHS meetings where very sophisticated masking behaviour convinced the psychologists that all this was normal growing pains. They were quick to accept that and get her off the books.
The diagnosis was worth pursuing at her age as she is still at Uni, they need to provide additional support that was not forthcoming before.
A long and rocky journey that has involved a lot of examination of our own issues too. My wife also displays some of the indicators, she has worked very hard to curb her reactions to defuse meltdown situations. Trying to stay calm is easier said than done and I have had to learn when to just walk away and not get involved.
Our children are too young to be diagnosed yet, but they could be similar result I expect or one might be higher. Guessing/suspecting.
what age are they? my youngest was diagnosed around at around 2 1/2yrs.
It important to get them diagnosed early , having SEN involved when he went to nursery, where he got one to one when needed was excellent, and the transition into primary school was great.
Not only that , we had home visits where we learnt so much about autism (my only real knowledge at that point was watching Rainman !!). As we learnt more, I found myself thinking I used to this , I used to do that. My wife often comments that it a shame my work OCD doesn't extend to keeping things tidy.
His traits have become more apparent as he gets older (8 1/2 now). As he has transitioned through the years at school some of the teachers have wondered if there is anything wrong with him, as he masks a lot. His current teacher has experience of autism and can see his trigger points and avoids them. The downside of the effort of masking most of the day is that he lets it out when he gets home. It can be tough , but knowing why he acts like that helps when it gets stressful.
Indeed, get the diagnosis as early as you can. My nephew received an autism diagnosis at around age 4 I think. It has helped with support at school a lot.
my OH is a teacher in a school for Autistic kids so she'll be watching with interest, not all parents can cope with or have the money for help with severely autistic children
took this just to see
https://flic.kr/p/2mNbZbA
some great advice on here, though as we know only to well it can be hard to diagnose at a young age unless its really apparent - going for appointments etc can add more stress to child and parents
My only words of wisdom are all families with Autism/ADHD have a their own journey to make...it doesn't always go to plan.
I look forward to watching this. Turbo trainer viewing tonight sorted!
@paino @barrysh1tpeas @tomparkin
My 10 year old was formally diagnosed as autistic last year. She also has PDA and ARFID (though ARFID is not yet formally recognised by the NHS, though some GP's do recognise it). She does not have an EHCP and this has proven a significant issue in securing secondary school place (be it state or private). She has avoided coats and tights since the start of school and fortunately the school has been accommodating and allowed my wife to make her 'skirt/leggings' which she will wear. Instead of a coat she uses a cape (made by my wife). As with others experience, this has been a learning curve for the immediate and wider family. We have worked hard in ensuring our younger daughter is aware of AS, recognising that there is a strong likelihood that she could feel she is treated second as elder daughter requires a lot more support. My wife at 44 was diagnosed with ADHD (when she told her colleagues the common response was "no shit!"), more for her own confirmation but also to held AS daughter understand she is not alone. Its tough, my heart bleeds for my AS daughter both for the struggles she encounters daily that are simply not recognised by the school but also knowing the pain she will encounter in the future.
My advice to anyone who is going through diagnosis now or has it for any primary age children is to push for an EHCP with urgency. From what we hear; expect to be refused first time around as LA are seriously underfunded in this provision and appeals are likely forthcoming.
What I have found most interesting is how tech companies (and forward thinking organisations) are recognising neurodiversity and embracing it, adjusting the workplace to welcome ND staff. Why? Because if you can foster and nurture their skillsets they can be a remarkable asset. And yet schools seem to be scared and see ND children as nothing more than a risk to their OFSTED record/grades.
Caught the last 12 minutes. I don't really know how an adult diagnosis really helps, but perhaps it might be useful in childhood. On the ASQ, on average the TiReds are normal. There is a LOT of variation, however, such that when Mrs TiRed filled it in for me, I was still over 40 😀 . I'm also red-haired, right handed, HLA-DQ4 and O positive. Genes, eh? Can't live without them.
going for appointments etc can add more stress to child and parents
We twice had to take little un in for a EEG test. You try to get a toddler to have electrodes stuck to his head ( any toddler, never mind one with Autism), timed with his usual nap time. Complete failure.
Second visit they gave us melatonin to help him drift off. Took him out in pushchair , he fell asleep, they put the electrodes on , started stirring , so pushed him back round for another 5 mins. Walked back into hospital, then as we were walking past the restaurant area, the fire alarm went off and the fire doors shut with us stuck between them. Needless to say that woke him up a treat.
We never did take him back for that test as they were talking about sedating or putting him under to get it done.
<deleted > sorry, not the thread for this...
I don't think a simple online test should be considered as any definitive proof there's something amiss, as adults perhaps the answers given are somewhat bias towards what they think the test wants to hear.
the actual test for autism, is carried out by a consultant psychologist and is as about as thick as an encyclopedia. But its not just about answering questions about yourself, especially in the case of an adult diagnosis, the entire history is relevant, going back to early childhood, any issues there, referrals, questions given to the parents, primary and secondary school reports, social interactions as a child and as an adult. Plus there's intellectual developmental issues from growing up in that at certain stages in that kids display traits.
Everyone growing up pretty much follows the same pathways, does this at this age, does that at that age etc etc. Autistic children don't really follow that path for the most part
I don’t think a simple online test should be considered as any definitive proof there’s something amiss
Of course not. But it could be a step towards seeking further research / help.
Also, I'm bristling a little at the use of "amiss." We're not amiss, there's simply fewer of us.
Good point Cougar, it's not helpful to think of it as "something's wrong with them" - even if it can feel like that.
As a parent, I think half the battle is just accepting that your kid is different and may not follow the conventional path. However I see a number of parents (including a senior teacher FFS) in denial and seeking alternative diagnoses.
Anyway, if anyone wants to vent/discuss kids with pathological demand avoidance, you know where I am.
" But it could be a step towards seeking further research / help."
A fair point, noted.
Bristling though 😕 over 'amiss' . Clearly you understand there would be problems that should be further addressed, but do you not think amiss is associated with 'Problems' or do you have an issue with my using the term 'problems' as well.
Let's face it, aspies are mental 😉 constantly wittering one about that single subject, oblivious to the boredom its causing others. I mean, have you ever spent time in a room full of them ?. Wowsers, impossible to get your own stuff across.
As someone with Aspergers the things i do "wrong" over which i have no control other than not engaging with anyone piss my other half off to the point of anger.
If i was in a wheelchair and she was giving me a that level of a bollocking in public questions would be asked.
Its a bit shit being an Aspie most of the time particularly in a relationship.
I have not really posted much on this forum before, but this is a subject which is close to home for me, so please excuse the very long post and if I start to babble unintelligently.
I watched this program with interest (like I have many others on Autism) and I commend Paddy and his wife for their honesty and bravery in agreeing to film this, it couldn't have been easy. I think some of the messages they highlighted such as the need for more tolerance, education and exposure of Autism and similar conditions is very important.
We have a daughter in her early twenties who has a learning disability, autism and ADHD. She has communication difficulties and frequent challenging behaviour. Due to her diagnosis, developmental delay and behaviours it has meant our lives have largely revolved around appointments and meetings with psychiatrists, CAMHS, DOLS, social services and other NHS/ care work professionals. It has been at many times a struggle that I would not wish on any one.
The behaviours she can exhibit vary, some are seen as low level inappropriate, such as continuous loud shouting or screaming, some are deemed higher level inappropriate such as stripping off her clothes in public places (until she is naked), forced defecation or urination. Some of her behaviours can be more extreme such as destroying public or private property, and self injurious behaviour such as hitting herself, headbutting objects, running into roads and swallowing dangerous objects ( e.g. batteries, glass, stones etc). She also has acted violently towards her family, carers, NHS professionals, and potentially anyone who approaches her or gets in her way when she is having a 'loss of control' / meltdown/ episode, whatever you want to call it. This violent behavior can take the form of hitting/ kicking out, grabbing and pulling out chunks of hair, and grabbing people by the throat. Most behaviours are triggered by frustration, anxiety, or are a reaction to a specific set of circumstances . Sometimes she can be talked down by us or her carers, but there are times where she tips over to a place in her head where she has a total loss of control which is when more major incidents occur.
Thankfully the actual instances of her causing anything more than bruises to people are rare, she is far more likely to cause herself more serious harm. When she does lose control hers or other people's property is often destroyed. The price or sentimental value of an object is not a factor. She has on occasions 'flat packed' her room and we are well into double figures of pairs of glasses, tablets and dvd players! I think there are definitely grey areas and a lack of understanding/ research surrounding the issues of responsibility, liberty and ethics for individuals with learning disabilities and/or life long mental health conditions, but that is probably a whole other topic (I'm certainly no expert).
Our daughter is currently in a specialist residential care home with 1:1 care inside and 2:1 care in the community (due to the challenging behaviour and for her and others safety). To balance some of the negative aspects above when she is 'calm' she has a really likeable cheeky caring character, is good company and popular with her carers, and loved unconditionally by all her family. For someone who is on the austic spectrum she is remarkably social (on her terms) and can understand some nuances of humour.
She has always had some challenging behaviours from birth, but she first started exhibiting violent behaviour (that was hard to deal with) when she was 12 which got progressively worse until she was 16/17. Our life for those five or so years was hell. When our daughter is going through a period of challenging behaviour it can sometimes last for just a few minutes but can also go on for hours and reoccur/ persist for days or weeks. One of the hardest side effects of when she is in that hyper state is she sleeps even less (which is normally only 4-5 hours a night). We had one period of three months that I will never forget where my wife and I didn't get more than a couple of hours sleep every night as we had to take shifts being with our daughter to prevent her hurting herself. Anyone who has experienced sleep deprivation will know how horrible it is and the negative effects it has. My wife is an angel and took the brunt of much of this as I sometimes worked long hours and often left in the morning dreading what would happen and what I would come home to.
Moving into Adult social services did not start well as the first supported living they found near us for her was not suitable and ended up with police involvement and her (and her carers) being put in unsafe situations. She has been thankfully in a more suitable placement for over four years now but she could potentially be moved by social services at any time as she is deemed not to have the capacity to make informed decisions about her living arrangements. Even though the carers in her current placement do an amazing job of keeping our daughter safe, she still has around 20 major incidents a year where her challenging behaviour is severe enough that it has to be reported and investigated, and of those at least three are extreme enough to potentially endanger her life. We do live with the constant fear of that phone call where she has done some irreparable damage to herself or to someone else, but try to put it to the back of our minds.
Sorry this has been a bit 'war and peace' but has been quite cathartic in a way typing it out, so thanks to anyone who has bothered to read this far. I am surprised at myself for baring my soul on a public forum, but I'm not posting this for any pity or to shock, but hopefully to highlight the reality that some families who have family members with ASD and challenging behaviour live with. Many families like ours end up avoiding society and challenging behaviour is rarely seen or talked about in the media (Louis Theroux's extreme love autism episode is one exception I can think of).
In conclusion as many have said on this forum and elsewhere our social care system is criminally underfunded, and carers such as those that look after our daughter are woefully underpaid for the extremely difficult job they do. It may seem strange for me to say this but there are times we are thankful that our daughter has been deemed to not have capacity as it means she should always be eligible for 24 hr care. IME there are many people with conditions such as autism and schizophrenia who are alone and vulnerable in the community and are constantly let down by our current social care system due to the lack of resources available. Autism is a spectrum disorder which means those on it all have their own unique personalities, challenges, behaviours, needs and abilities. In my opinion one thing that would help would be the creation of a multi agency care network with better communication, education and clearly defined roles which could act and sometimes intervene based on empathy and understanding.
Its a bit shit being an Aspie most of the time
.
While I agree with you mostly, I should also say it can be somewhat liberating to know why we do the things we do and not to be left sitting in worry as to the traits that seemingly plague us. For me I found it answered a whole lot of questions about my early life, though posed many more I still feel it is to my benefit knowing, because I can at least to some degree work towards being a bit more socially active.
The single subject trait, can be used to the advantage of the aspie, in that we absorb info better and quicker and can become experts in that field, and go on to having careers in the top tier.
I think the disorder is hereditary, and I believe there is some scientific evidence to support that and I also believe my Father was autistic, He rose to be principle engineer of bae systems, a member of mensa for many years,from humble beginnings felt himself he could judge things with an almost supernatural ability, if he felt it was wrong, then it was wrong.I remember he told me a story, which would have been the mid eighties or thereabout where he work out some formula, inputted that data into the computer system they used at the time, mackintosh or such, and the answer came back in conflict to his own answer. Felt it was wrong, out with the slide rule, did it again on paper, imputed the data again and still got the answer back that was in conflict to his own. So he apparently changed the computer programming to match his answer 😆 I think he was what is called savant.
He didnt really go into much detail and never to my knowledge admitted or studied autism from his own perspective, nor I think even thought that he may be.
So if a child is diagnosed early, and understanding that finding the right career will help with social inclusion, so instead of trying to point the child in one direction or another academically, more emphasis can be placed upon the area that interests then, because it is understood that you cannot really get an aspie to change his spots, and fighting against them causes more harm than it solves.
What I took away from the programme was that he had an attractive wife who had ruined her appearance with plastic surgery. Why do women do it ?
@burntembers - Thanks for sharing that, it must take great reserves of strength to provide such love and support.
The range of experiences shows why neuro diversity is referred to as a spectrum.
There are clearly extremes of the spectrum where multi agency support is obviously required. But that spectrum also covers people who should, given understanding and support, be able to live happy, independent lives. Just because you or your child's case isn't at the extreme end of the spectrum don't think support isn't justified. Fight to get it if you think it is needed, it can be a lonely place without it. It is also very hard to tell a teenager who is already terrified of being different that they might have a condition that requires professional help.
Take care of each other.
Thanks @ Grum and robola for your response. It was a bit of a stream of consciousness late last night and I did um and arr whether to post it or just hit delete. I probably couldn't have written that a few years ago but thankfully we are in a more stable place as a family at the moment (trying to ignore the covid elephant in the room). For me cycling, music and occasionally lurking on singletrack helped me through many dark times mentally!
I also really don't want to paint the picture of all doom and gloom though, our daughter is amazing and has given us many times of extreme joy, happiness and laughter that far out way the bad times. What we have experienced has meant we have seen the very best and sometimes the ugly side of society. For us the Challenging behaviour is inextricably linked to her Autism, and I guess I just wanted to highlight how Autism can mean very different realities for different people/ families. I am certainly no expert but through contact with other families and carers we have met through our daughters' school years I have seen how wide ranging the impact of autism can be on day to day life.
For anyone that doesn't fit into a society's norms it's inevitable there will be challenges ( I myself suffer from crippling social anxiety and awkwardness at times), but as a society we do have the ability to be more tolerant and understanding which can be achieved on an individual and collective level. I do think in some ways we have come a long way in the last 50 years or so but still have a very long way to go. What seems so obvious and simple to me such as not mocking, laughing or pointing at a young person 'hand flapping', rocking or making unusual noises unfortunately is still not the case for many people, and real prejudice and intolerance goes so much deeper than just that short example.
Our 9 year old daughter has had struggles from day 1, with some quite severe anxiety disorder. It’s heartbreaking. This morning she screamed for an hour all because her leggings were uncomfortable. She can be late for school a couple of times a week. At school she comes across as a different person, she maintains healthy friendships and the teachers barely know her struggles because she masks so well. She’s knackered when she gets home.
We have had similar with one of our daughters - even from being a baby she liked to be surrounded in bed by piles of soft toys or would push herself into a corner, has always found clothes uncomfortable, things having to be 'just right' (hair especially), we had a horrible time from age 9-11 with severe anxiety (school refusal, couldn't have overnight stays with friends, we couldn't go out because she wouldn't have a babysitter apart from granny & granddad at a push). Things came to a head when her head teacher made a threat that a little song routine she was going to do with friends at school assembly would not be allowed to go ahead if she didn't attend school – she threatened to kill her and that was when alarm bells immediately rang that there was something very seriously concerning going on and we insisted on things being escalated.
However now (aged 12) she has outgrown lots of the really strong emotions and is learning to cope with more minor things like uncomfortable clothes. She did have therapy for over a year (although never had a formal diagnosis of anything) which certainly helped and weirdly I think lockdown helped (despite completing primary school in lockdown and starting a new 'big' school with no transition to prepare her) – we simply think it actually reset her brain and formed habits a bit.
@burntembers thanks for sharing that. Especially that things are difficult but also rewarding. I work for an organisation that supports people on the autistic spectrum. My colleagues are amazing and I think people don’t realise how challenging small things can be to someone with autism. And yet effective, understood rhythms and routines can enable a full life. Many people on this thread have spoken about masking and that is a recurring theme for us. It must be incredibly tiring. There are very minor adjustments in supporting behaviour we could adopt as a society that would enable an easier and better quality of life for many people. The most important thing though is to recognise that each person is unique, that sounds trite but can get lost when we start to talk at a macro level.
@sparksmcguff Yes I agree greater acceptance of uniqueness and difference is key to societal change for the better.
I think it's people like yourself and your colleagues (who I have the upmost respect for) that do an invaluable job that will help enable that change.
As you and others have said, with the right guidance, support or care package people today with Autism I think have much better life prospects than in the not too distant past. Especially people on the more able end of the spectrum of whom many can live 'normal' happy fulfilled lives with just a few learnt coping strategies.
From my own personal experience though I do think from a social services perspective there is still currently some gaps in understanding which result in not always meeting the needs of those on the more extreme end of the spectrum. This is largely down to lack of funding and resources, and also sometimes due to a lack of communication between social workers, service providers, service users and family members.