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 – that’s brutal. Well done for writing all that out.

@FunkyDunc – really? 🙄

@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.