acorn-autism-services

Are Social Skills ‘Deficits’ an inherent part of Autism?

Tue, 18 Jan 2022 15:09:26 GMT

Or, do both Autistic & Neurotypical people need to learn how to socialise with each other?

“When I was little the most common thing other kids said to me about what they know of Autism is “Autistic kids find it hard to make friends” or “Autistic kids don’t know how to make friends”. If I asked for more information, like “why do Autistic kids have this trouble”, they did not know an answer, only that it’s what their parent or teacher had told them.

Sometimes though they would reply something like “because Autistic kids don’t know how to play” or “because Autistic kids don’t understand normal people”.

It meant from a very young age I, as an Autistic kid (and my friends as neurotypical kids) were both being taught Autistic kids are not capable. It meant too neurotypical kids were being conditioned to believe it was a one-sided ‘problem’ – mine, and a ‘problem’ which they had no responsibility for.

I have privilege that many Autistic kids do not have – neurotypical friends who understand they have (and take) equal responsibility for the success or failure of interactions with me. This means just as I have taken responsibility for learning how they communicate, how they use their body and face and how they express emotion, they too have taken responsibility for learning these things about me.

This is because I had privilege from when I was very small of my Mumma helping my friends (and me) to understand the different ways our brains worked. When I started making a new friend, Mumma would play with us together at home. She would play games with my new friend and me that showed us how we communicate and play differently, how we show our emotions differently, how we use our body and face differently, and how to look for those differences so we could cooperate to work with each other’s differences.

It is a problem though that me having neurotypical friends who take equal responsibility in interacting with me is a ‘privilege’. It is a privilege too that is limited. It is privilege that disappears when I am with a new person or new group of people. It should not be that way”.

Autistic people and non-Autistic people communicate and interact differently. This includes not only how each neurotype understands and uses language, but how both groups convey emotion and how they use and interpret facial expression and body movement – the things that underpin how social interactions language are undertaken and interpreted.

In the past, these social differences have been framed as a ‘deficit’ characteristic of Autism and the Autistic person held responsible for unsuccessful social interactions.

But, this view ignores the fact that social interactions are exactly that – bidirectional, a two-way interaction between individuals. This means the view that Autistic people have specific social interaction deficits comes from a socially constructed combination of (a) neurotypical expectation that social interactions can only be successful if done in a neurotypical way or (b) inflexibility or unwillingness of the neurotypical brain to identify and understand emotion, facial expression and body language that is different from their own neurotype.

Evidenced based Research shows:

Autistic people communicate and interact effectively with other Autistic people. Autistic people display minimal social skill deficits when engaging in social interactions with their own neurotype.
Autistic people can and often do learn to interpret neurotypical facial expressions and body language and constantly use those learnings to try to bridge social interactions with neurotypical people, including using mimicking and other masking tools.
Neurotypical people find it difficult to read and interpret the emotion, facial expressions, and body movements of Autistic people. There is generally an absence in neurotypical people learning to interpret emotion, facial expression and body language of Autistic people and therefore associated absence in neurotypical people effectively bridging unsuccessful social interactions.

In essence, research is telling us both Autistic and non-Autistic people often have effective communication skills and ability when communicating with other people of their own neurotype. When bidirectional reality between different neurotypes is considered, Neurotypical people are reliant on the Autistic person bridging social interactions for the majority. When the Autistic person is unable to bridge the interaction, this is perceived by the Neurotypical person as a communication failure (or deficit) of the Autistic person.

Continuing to place the burden of responsibility for unsuccessful social interactions between Autistic and neurotypical people solely onto the Autistic person is ableist, unjust, and intensely harmful to Autistic people. It plays a key role in the substantially higher level of comorbid mental health conditions in Autistic people, and a significant role in why Autistic people have, in general, a life expectancy of around 20 – 30 years less than non-Autistic people. It must stop and be replaced with a mutual responsibility between both neurotypes.

10 Things that special needs parents want you to know but don’t say…..

Wed, 12 Jan 2022 07:50:01 GMT

Sometimes there are things we don't like to openly admit as special needs parents, we keep them close to our chests…so here goes...

1. We are are not Superheroes! We hate it when people say, 'we don't know how you do it'

We don't want to hate it, but we do, we want to take it as the compliment you meant to deliver it with, but we can't. We weren't born with a cape! We don't spin in telephone box's and come out in hot pants and a crown… in fact we are juggling so much we sometimes feel we may go under; we are normal everyday parents like you – no special powers here!

2. We are scared of what each day may bring, but we are fantastic at not showing it!

We are masters of smiles and control, we ooze calmness, that meltdown is no problem we smile while we get punched kicked and stared at! We compose ourselves and ignore the stares – like you don't exist – but we see you! And it hurts, if we were truly truthful we worry about what the future holds for us every day – we wake up wondering what the hell will today bring and have I got the energy to see it through! We worry about not being immortal!this keeps us up at night – who will look after them – who will love them and make sure they have everything they need like I do – it's a terrifying thought and one we have on a daily basis and gives us many sleepless nights! If only we could live forever!

3. We hate being called mum or dad in meetings!

OMG JUST STOP! Do professionals not realise how de-empowering that is and how patronising we feel when sat in a meeting and addressed as mum or dad! It totally disrespects the knowledge we bring to the table! We know our stuff; we are more than just 'mum/dad' treat us with respect and use our knowledge! Please call us by our name!

4. We also only have 24 hours in a day

I sometimes feel people think once you have a child with autism or special needs they come with a 48hr day instead of 24! Do you? All of a sudden we have a million appointments, GP, Paediatrician, speech and language, OT, behavioural therapy, assessments etc and from those appointments we get lots of strategies and tasks to do – it's us that have to do them all – fit them all in, they will see how we get on in 3 months! Add that to the forms we need to fill in to request services or funds and that's before being a parent! Ohhh don't forget to add on the medical procedures, medications, homework, school meetings, LA meetings and EHCP meetings – IT'S A VERY LONG DAY! Is it time to cook tea yet!

5. We are sometime envious

We don't want to be; but we are. Of your dance groups, swimming and holiday clubs, while we struggle to find somewhere our children are accepted and have the right staff to take care of our children safely, we are envious of your freedom to relax, to get a simple babysitter without a million qualifications in SEND and that doesn't cost more than your meal out! We can be envious when you can meet with friends and chat about random things. We can't always have that, so although we are happy for you we are hoping it may be us one day! We also struggle when the invitations stop, we get asked to many things but often we can't go or we have to cancel, but just being invited means the world to us – when those stop the heart hurts a little – we get over it, but we still feel it!

6. We don't want your advice!

Advice from those that do not understand our kids is pointless, please don't do it, 'he'll eat when he's hungry' if only it was that simple! 'he needs to be disciplined more' oh really so we should punish him for trying to communicate his needs? 'she needs to stop doing that' great thanks for that that's really helpful! we'll start tomorrow! You know what I'm saying, I can feel you rolling your eyes with me! If you have real supportive help that work's and you have understanding, great – if not just a hug will do – now that will be welcome!

7. We are very different behind closed doors!

We are masters of the mask! Once we close the door we can crumble. Often we wait until we have settled our children and then we have a cry! We cry for the struggles, for our children's future, we cry about finding tutors, about the next meeting, or because we are just so exhausted, we cry because that meltdown was hard and we are more than aware, if it was hard for us, it was 1000 times harder for our kid – that's not easy to digest – no parent wants that for their child. We take our time to cry and then we mask back up and crack on – but what you see is not always the truth.

8. We absolutely love our child with needs

We want your understanding and acceptance, not your pity, we don't need that! Our children are amazing, and we absolutely love the bones of them, that should never be questioned! It's the watching our children struggle, the fighting for support and schooling and just getting their needs met that's frustrating, tiring and damn right annoying, the system is broken that's what leaves us broken! that's what makes us grey! Not our children.

9. Stop dissecting our kids!

The system dissects our children on every level while we understand they need to prove need when assessing or discussing diagnosis and needs, but our children are torn apart – often in front of them too – they listen from a young age about everything they can't do, just stop doing that! no wonder autistic children and young people can suffer with lack of confidence and mental health when they hear this from such a young age! It's so hard for our young people when the system requires their dissection to prove their difficulties in order to get the support they need.

10. Don't say: "You should really make time for yourself. You need to relax. Maybe schedule a massage? "

Life can be incredibly overwhelming. We would love to take time to ourselves, that would be incredible, we know you mean well, because it's true we do need 'me' time but to be 100% honest that sometimes, as the parent of a child with autism, it's just not realistic, so maybe instead of telling us we need to take time out, maybe offer, you can say 'hey anytime you need time out I'm happy to babysit or take them out to the park or have them at mine or come to yours!' Don't wait for us to ask – it makes us feel like a burden, sometimes it's nice to offer as though you want to do it rather than us asking if that's ok, we would really appreciate it and it would really make a difference to us all as a family.

Available at:

https://reachnorthwest.org/blog/10-things-that-special-needs-parents-want-you-to-know-but-don-t-say?fbclid=IwAR11HkVLngHmFlnNfsPzUuuxnZkS_3J5rnedpwDFQH5W1r_4pP3hjetT7Ds

Autistic Selves is a system of personas who live together in one body. We are diagnosed with both Autism and Dissociative Identity Disorder (DID).

Wed, 05 Jan 2022 16:29:42 GMT

#AutisticSelves are an #autisticsystem of #alters who live together in one body. Formally diagnosed - #DissociativeIdentityDisorder and #autistic

'After we were first #diagnosed with #dissociativeidentitydisorder 20 years ago, we worked towards #integrating our alters and did achieve this for over a decade. Or we weren’t aware of our #talters during those years. All our alters are back now and we prefer it this way.'

A wonderful and illuminating journey encapsulated through visuals.

Watch here:

https://youtu.be/aDvhf-0qTp8

How to explain an autism diagnosis to my child.

Tue, 04 Jan 2022 07:43:02 GMT

Understanding and processing your child’s autism diagnosis is one thing, but explaining it to your child is entirely different. It is not as simple as a one-off explanation either. Rather, explaining a diagnosis then sprouts a range of questions and conversations that will continue and change as your child grows. Here are our suggestions on how to explain an autism diagnosis to your child now and some things to keep in mind moving forward.

Start with an open, honest discussion and keep it open

Honesty is the best policy for a reason. Speaking the truth to your child immediately about their diagnosis lets them know that they need not be ashamed of it nor keep it secret. Beginning with an honest and open conversation sets the tone for further discussions on the topic.

Check in with your child regularly. Let them know that you are there for them to discuss and navigate any concerns, difficulties and of course, wins! Letting your child know that they have autism is not a one time discussion. It is an ongoing conversation that should always be open.

Talk about autism, strengths and differences in a positive way

Whilst often weighed down by its negative connotations, autism has many positives. Greta Thunberg describes her difference and place on the spectrum as a ‘superpower’. As with any child, whether neurotypical or neurodiverse, strengths and differences should always be referenced in a positive way. A diagnosis can only be a good thing because it means that you can cater to your child so that they can live, learn, and play in the way that best suits their needs. Likewise, other key people in your child’s life, (teachers, coaches, family members and friends), can have a better level of understanding of your child and assist in making their life easier.

Watch some videos from actual autistic individuals

By watching videos of real autistic people, your child will grasp that autism is on a diverse spectrum. They may also see themselves in one or more of the individuals they watch, and feel comforted that others experience the world in the same way that they do.

Encourage your child to be themselves

An autistic person is not defined entirely by their diagnosis, it is just one element of who they are. We all know that our children are unique and that their individuality should be celebrated. Knowing when they can challenge or limit themselves is important. They do not need to get up and do a speech in front of the school, just because the majority of the class is. They can do things their own way and march to the beat of their own drum. Wouldn’t it be amazing if we all had the courage to know ourselves so well?

Give them the choice of if they want to tell their friends

Just as with any element about yourself, it should be on your terms of who and when you tell certain people. Your child may want to tell their friends, or they may not. It is important for them to be comfortable in making these choices when and if they are ready. They might need time to understand and be comfortable with the diagnosis themselves before they tell others.

As with any serious conversations with your child, it can be difficult to begin. And similarly, the basics of any important discussions ring true. Keep it honest, open, positive, and be there to support your child with any questions or concerns they may have. That goes for initially and into the future. You know your child better than anyone so the nuances of how and when you approach the situation are yours to decide.

Available at: https://www.kidsonthespectrum.com.au/uncategorized/how-to-explain-an-autism-diagnosis-to-my-child/?fbclid=IwAR2lH4dSsYEvcay6LNEC61lxkGALfhd0ftY5QJr959ECDTM1xk4dF2DJCFQ

Diagnostic criteria - a guide for all audiences

Tue, 04 Jan 2022 07:07:51 GMT

Diagnostic criteria - a guide for all audiences

Diagnostic manuals, ICD-10 and DSM-5, set out the criteria for autism to be diagnosed. These create the foundation for diagnostic tools such as the DISCO (Diagnostic Interview for Social and Communication Disorders), the ADI-R (Autism Diagnostic Interview - Revised), the ADOS (Autism Diagnostic Observation Schedule) and 3Di (Developmental, Dimensional and Diagnostic Interview).

Diagnostic criteria

The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

In DSM-5, the terms ‘autistic disorder’, ‘Asperger disorder’, ‘childhood disintegrative disorder’ and ‘Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)’ have been replaced by the collective term 'autism spectrum disorder'. This means that it’s likely that ‘autism spectrum disorder’ (ASD) will become the most commonly given diagnosis.

Available at:
https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Autism: Workplaces 'need to be more supportive'

kate@acorn-autism.co.uk (Kate Mary) — Sun, 05 Dec 2021 18:49:29 GMT

An autistic woman said her experience of work was traumatising and more consideration was needed for neurodiverse employees.

Alice Banfield, 25, from Cardiff, said overstimulation and lack of communication led her to have an anxiety attack while working as a shop assistant.

"It didn't really encourage me to seek employment after that," she said.

Figures suggest just 22% of autistic adults in the UK are in employment.

After graduating, Alice took a part-time job as a seasonal shop assistant.

"It was very traumatising to me at the time," she said.

She said she was not given clear instructions, struggled to read her colleagues' and customers' body language and was overstimulated by the busy and bright environment.

Disclosing her autism did not help.

"It was really stressful and put a lot of anxiety on to me and to the point I had an anxiety attack during one of my shifts.

"It really triggered [a lack of] trust in working with others and didn't really encourage me to seek employment again after that."

Alice is now a freelance artist and aims to educate people about autism through her work.

"I just don't feel like there is much support regarding employment for autistic people," she said.

An estimated one in seven people in the UK are neurodivergent , which includes people with dyslexia, dyspraxia, ADHD, the autism spectrum and other neurological functions.

Rebecca Ellis, 29, is a PhD student at Swansea University and received her autism diagnosis when she was 24.

When working full-time as a behavioural assistant at a mainstream school two years ago she suffered long-term fatigue and burnout.

"We were needed at break time, at lunch time, before school, after school, in between lessons and during lessons.

"Even in the staff room there were eight of us in there, it was very loud, everyone's always trying to get their lunch... it's very busy and it's very friendly... but even friendliness can be overwhelming and quite a lot to be dealing with if you're trying to have a moment to yourself to calm down.

"It became overwhelming and I experienced burnout from work, which is where you're just incredibly exhausted and fatigued and you can't have can't push yourself to do it anymore."

Rebecca wants to see a number of accommodations made for autistic people at work.

She would like either alternatives to an interview, such as a written assessments, or changes to the way interviews are carried out, such as giving autistic candidates the questions ahead of time.

'Overwhelming situation'

"Starting a job is going to be one of the most overwhelming things for an autistic individual because you haven't met your colleagues... you don't know the environment, you don't know the parameters of your job, and all these things can create a really overwhelming situation," she said

She suggested offering autistic employees a job induction, a mentor and taking the "burden of asking for accommodations off the autistic person and managed by someone who has been trained in working in a neuro-diverse environment".

Sound-cancelling headphones, "a quiet space in which no-one comes to find you" to retreat to when feeling over-stimulated and individual work spaces to give employees "a safe space to return to" would also help, she said.

She said most of the changes would benefit everyone.

Dr Vaughn Price is the principal psychologist at Beechwood further education college in Sully, Vale of Glamorgan, for students with autistic spectrum conditions.

The college offers experience of work through its coffee shop, selling crafts on an online marketplace and having a workspace set up like an office environment.

He said if workplaces could accommodate autistic employees they would reap the rewards: "Some of the students I work with are the most hard-working, honest, dedicated, imaginative and creative people that I've ever met.

"You meet the needs of an autistic individual, by far they could be some of your most productive, happy and dedicated workers. The possibilities are great."

Sian Donovan is director of Cardiff-based cycling charity Pedal Power, and after taking advice from Dr Price on how to make the charity more welcoming to autistic people, she took on an autistic volunteer to help with administration.

"He has great difficulty in in communicating with large groups of people and people that he doesn't know but has an excellent brain - we found that once a task was explained, provided he was left quietly to work in an office, he would do an excellent job, and he was very comfortable knowing people would not try and engage in chit-chat".

She said she would encourage others to take on autistic workers and volunteers: "Don't be afraid of labels... or think that you can't cope, you're just dealing with individuals who may not be as comfortable making eye contact as others but it doesn't mean that they won't be able to do an excellent job."

Cardiff-based motor insurance company Admiral said it had more than 200 neurodiverse employees and had trained about 200 line managers in how best to support them.

It said it provided support and adjustments to employees from the recruitment stage and throughout their career.

The company's head of diversity and inclusion Sian Lewis said: "We have a deep appreciation of the attributes people from diverse backgrounds can bring.

"Bringing in someone with a totally different way of thinking and a completely different perspective can be invaluable."

The Welsh government's new Code of Practice for Delivery of Autism Services came into effect in September.

It also published a delivery plan where raising employers' awareness of autism and the code is listed as top priority.

The Welsh government said it was "committed to improving the lives of autistic people and access to meaningful employment opportunities is an essential part of this".

It said it had recently appointed five disabled people's employment champions to help close the employment gap between disabled people and the rest of the working population.

Available at: https://www.bbc.co.uk/news/uk-wales-59049557

Do autistic girls talk differently about social groups?

kate@acorn-autism.co.uk (Kate Mary) — Sun, 05 Dec 2021 08:26:30 GMT

“This finding is especially important because girls with autism are not as well understood as boys” Julia Parish-Morris

New data, published in the Journal of Child Psychology and Psychiatry, suggest that pronoun use during natural conversation might inform us about clinically meaningful social function. Amber Song and colleagues set out to understand whether they could identify natural language markers of social characteristics exhibited by girls and boys with autism. To do so, they recruited 50 school-aged autistic children (17 girls and 33 boys who were matched for level of social impairment) and 37 typically developing children who were matched for age (mean age = 11.35 years) and IQ (mean IQ = 107). They then asked the children to engage in a short, informal conversation. From the conversation sample, the researchers analysed the use of first person (e.g., “we” and “us”) and third person (e.g., “they” and “them”) plural pronouns to determine whether autistic girls and boys talk differently about social groups.

Overall, autistic children used significantly fewer plural pronouns than their typically developing peers, indicating that they talked less about social groups. However, autistic girls talked more about social groups than autistic boys. Yet compared to typically developing girls, autistic girls talked more about groups they were not a part of; this was indicated by more frequent use of the pronouns “they” and “them” and less frequent use of “we” and “us”. The researchers speculate that this finding might demonstrate potential awareness of social exclusion in affected girls.

Finally, Song et al. assessed whether pronoun use could predict ADOS-2 scores in children with autism. After controlling for age and IQ, they found that “we” and “they” variants significantly predicted ADOS-2 social affect but not repetitive behaviour scores in girls. Thus, pronoun use might predict individual differences in social function in autistic girls.

“This finding is especially important because girls with autism are not as well understood as boys”, explains study author Julia Parish-Morris. “When we learn more about how girls with autism behave in the real world, it helps us develop personalized supports to address their unique needs most effectively”. Although this study was relatively small, the researchers believe the data serve as a proof-of-concept that natural conversation samples might inform us about clinically meaningful social similarities and differences between girls and boys with autism.

Song et al. now plan to expand their work to include more participants and to collect data using semi-structured question-and-answer formats. From here, they hope to determine whether the identified patterns hold true for other age groups and those with lower, or higher, IQ scores. Future research might then test whether subtle linguistic clues can help improve identification of autism in girls.

References:

Song A et al (2020). Natural language markers of social phenotype in girls with autism. J Child Psychol Psychiatry, 62, 949–960.

Laughing is not always a laughing matter

Sat, 04 Dec 2021 14:17:22 GMT

In autism, there is laughing/giggling and ‘laughing/giggling’. There can be numerous reasons to laugh, which are difficult to understand by ‘outsiders’:

Of course, autistic individuals laugh when they are happy, or if they find something funny.

However, they often laugh to release fear, tension and anxiety. What is very difficult for their parents to comprehend (and accept) is that they might laugh or giggle non-stop when someone is crying. This may be one of their defensive strategies – when they are sad, they try to lessen this by ‘feeling the cheerful emotions of a happy mind-movie’ (O’Neill).

‘Perceptual thinkers’ experience thought as reality. This means that when they think about something, they relive it visually, auditorily and emotionally. O’Neill (1999) compares this with ‘watching a movie: a mind-movie’ – the pictures of thoughts in this movie ‘transport you and create emotions as you view scenes’.

It is not uncommon to see autistic children giggling to themselves. One reason might be that they are reliving some funny moment, using recorded, stored sensory images. Funny memories triggered by sight, sound, smell, movement, etc. bring bursts of giggling. (While remembering, they re-experience those funny moments).

Some (with hypotactility/ hypoproprioception/ hypointeroception – either permanent or temporary) may laugh when they experience pain. For example, if the child doesn’t feel anything, he can scratch himself, bite himself, bang his head against the wall – causing himself pain, to ease emptiness/ feel something; then even pain can be a pleasurable experience – it brings the feeling of being alive.

They perceive certain (visual/auditory/tactile, etc.) stimuli differently: some of them can look/sound/feel funny – so the child can start laughing.

Synaesthetic experiences often cause laughter: certain sounds, for example, can produce funny tickling on the skin or fascinating colours or sparkling lights and the air becomes full of light tongues of different colours.

To please others: when others are laughing at a joke or a funny situation, the child may start laughing as well (even without understanding of what’s so funny). Seeing that his mother, for instance, was pleased with this reaction, next time in a seemingly similar situation, the child might start giggling to please those around him.