Category Archives: Adults

For adults with autism, their parents or carers

Neuro-diversity

Neurodiversity

The idea behind neurodiversity is that  brain differences with conditions like autism are normal and can be beneficial.      Here is an introduction to neurodiversity.      To get an idea where it might be heading as a movement click icon.

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This page is dedicated to publications from the viewpoint of people who do not fit in with today’s prevailing norms, notably Asperger’s Syndrome – and those close to them.

Steve Silberman

Steve Silberman is an award-winning science writer and has a lot to say about autism.       Click icon to browse his website.       In particular, look for the video in the right column: The forgotten history of autism.       See also Profile

The man who wants us to embrace autism

See Guardian article,        It explores his views and insights.       For example, Two further developments, thinks Silberman, make life much brighter for people with autism today.      One is social media: “In face-to-face, real-time interactions, people on the spectrum are often overloaded.       Conversation, eye contact, body language, all the little social signals – that can get too much.       Whereas, on the computer, at their own pace, it’s often much more natural to them.”   

He is the author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity – see Amazon.       

Autism as a mode of being

Dan Edmunds is a psychotherapist in Pennsylvania.       He is involved with the autistic rights movement.        He seeks to understand the autistic person rather than trying to change him or her.       Click icon for his article about Autism.        How does this work out in practice?

Difference or disorder?

There are two ways of thinking about disability.      It seems to depend on how you look at it.        Click icon for an article.

Also, this forum post sets out how the writer sees legislation based on the social model of disability working out.

Amythest Schaber 

Amythest Schaber is an artist, writer, public speaker and advocate.         In her blog called Neuro Wonderful she offers insight into autistic life, put across in her unique style.        Click play icon to see her range of videos.       For example:  What is autistic burnout?
Something new!

Stories from the spectrum

What is it really like to be an autistic adult?       The National Autistic Society has collected together stories from a variety of people across the autistic spectrum.       Click icon to browse and see what they have to say.

Also, ITV has produced an autism awareness series.       For example, Professor Ian Walker shares his story.
He is a retired university lecturer who was only diagnosed with autism at the age of 71.      Click link below to see article and video clip.       Find more interviews from the series at the bottom of the ITV page.

What is it really like?

Autistic not weird

This is a website by a special needs tutor with Asperger Syndrome.       Click icon on the right to browse.       For example:  Being different

Why advertising falls flat

This article considers the possibility that people with autism might be savvier consumers.        Click icon to see article.

Autistic Allies

This is a discussion group for members.       They stress that it  is NOT a support group.      Their goal is to eradicate stereotypical images of autism, and to promote an autism-positive stance.        Click icon for Facebook group.        You have to join the group to see content.        See also Austism-positive.

NeuroDivergents

Monique Craine is a blogger, activist and campaigner for NeuroDivergent (ND) rights, AKA Human Rights.          She says, This video was inspired by a Powerpoint presentation which I delivered in the past – which people claimed ‘opened their eyes’ to autism.          It has been receiving praise from the autistic community, autism professionals and parents.          Click play button to watch.

Non-speaking / low-functioning?

I am autistic, non-speaking. I am also labeled “low-functioning”.      This label is a pre-judgment based on what I cannot do.       It makes people look at me with pity instead of trying to get to know me, listen to my ideas.

Facbook small iconAutonomous Press

Owned by disabled workers, Autonomous Press seeks to revolutionize academic access.                  This can refer to a lot of things, e.g.  access to higher education, inclusive class environments …           See About for more information.

Neuro-cosmopolitan

This website could be a treasure trove for the gifted academic or teacher.

  • Here is one of the author’s more accessible articles: Advice to Young Autistics I did learn to navigate the neurotypical social world. But I didn’t approach that task with the intention of trying to change myself in order to “fit in.” I approached it as an adventure in learning my way around an exotic foreign culture.
  • This could be a good starting point for further reading: Neuro-what?

OutlookBe awesome

These links are all from the Ollibean website.         If you are always questioning things, maybe a bit of a non-conformist, this site could be a useful starting point.

  • Attitudes  –  We need to start to change how non-disabled people see disabled people, and then we can begin demanding a change in attitude.        We have enough true allies to join and support us, and we can demand what we decide we need to live a fulfilling human life.
  • Be awesome   –  Ableism – discrimination against disabled people, often unconscious/implicit.        Ableism brought forth by pity is frustrating.        It gets in the way of possibilities.
  • Universal design  –  When more people participate, everyone wins because human beings learn from each other –   e.g.  Captioned videos, films and TV help with literacy, including literacy of non-disabled people.
  • False choices  –  e.g.  Is autism a disability or a difference?

Original and tribal minds

What started out as an explanation for autistic behaviour has with twelve years of obsessive thought become the basis for a profound shift in thinking about psychology.       See introduction.

Key words

Ableism:  quick          detail
Autism-positive:       article
Aspie:                description
Neurodiversity          article

Take part in research – Just dance

Just dance

Researchers at the University of Essex are currently working on a new project that involves autistic children playing the exercise game Just Dance with their parent or primary caregiver at home.      Online taster session on 15 September 2021.     Click icon to find out more.

GAIN was contacted by Phoebe Morris (MBPsS). PhD Studentship at the University of Essex.

Cambridge research

Would you like to register with the Autism Research Centre (ARC) at the University of Cambridge, headed by Professor Simon Baron-Cohen.   They aim  to understand the biomedical causes of autism spectrum conditions, and develop new and validated methods for assessment and intervention.      They are looking for adults and parents of children with an autism diagnosis. 
Click PDF icon for poster or twitter icon for updates about taking part.
See also:  website        volunteers

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Archive

School environment

This is a study of the ways in which a changed school environment has affected primary school children with ASD.    Would any parents/carers with a child aged 5-15 who has been diagnosed with Autism Spectrum disorder like to take part in three online questionnaires?       Click icon for a letter from the researcher and a link to the first survey.

Sleep study

The University of York is running a project charting the early sleep patterns of infants at risk of developing Autism Spectrum Disorders.     If you have a baby with an older brother or sister with Autism they would love to hear from you.     This project explores sleep patterns in infant siblings through the use of sleep diaries.     Click icon for poster.     See also official project information.   The university will provide all items and materials as needed.       (Posted Oct 2017)

Child study

Are you a woman with autism?      Are you pregnant?      Click icon for the study poster.       Here is the study summary.     See also the website associated with their email address.

Carer technology

Would you be interested in taking part in a 3 month trial of a technology package to assist in co-ordinating home care?

1.      It provides the person being cared for with greater social interaction with their friends and family as well as reminding them to take their medication.
2.      Gives Carers the peace of mind with information about the person they are caring for such as through movement sensors confirming that they have visiting the toilet, opened the fridge door or medicine cabinet.         This is done by setting up various sensors and equipment, such as blood pressure monitors that can be linked to the technology.

See:   Technology       Letter        Form         Everyone website – emerging from Lincolnshire Carers & Young Carers Partnership (LCYCP)

Button - playNon-compliance behaviour

Could you spare some time for a telephone interview for a research project.            Click button for a video introduction.

Here is a little bit of background information about the project, that could be posted up to accompany the video:

We are researchers at the School of Psychology, Queen’s University Belfast and our project focuses on children’s non-compliance behaviour.
Non-compliance behaviour is when a child:

  • Ignore your requests…
  • Tries to talk their way out of doing things
  • Directly defies you
  • Says “no” a lot

Almost all children show some of these behaviours, but some children with autism seem to struggle especially with these sorts of behaviours.
Surprisingly little research has been carried out on why some children particularly struggle with non-compliance.    We aim to find out more about the factors that can influence the non-compliant behaviour children show so that we can start to develop bespoke helping strategies specifically designed for these behaviours.

We would like to hear from you if you are a caregiver of a child aged 5-11 years old who frequently shows the behaviour described above, and who behaves like this across different settings and where you feel the behaviour may be having a negative impact on the child and/or on the family. 

In this initial study, we would like caregivers to take part in an interview over the phone to talk about the behaviour.      Everyone who takes part will receive a feedback report about what we have found when this initial study is finished and we will update any families who wish with information about our ongoing progress in this project and future participation opportunities.

If you are interested in hearing more about the study and would like more information, please contact:

  • Katherine Grady:          kgrady01@qub.ac.uk                07926 076 790 
  • Luke McCann:               lmccann32@qub.ac.uk
  • Kate Woodcock:            k.woodcock@qub.ac.uk            028 9097 4886

The interviews are due to be completed by the end of June 2016.

Self-Injurious Behaviour

This was an on-line survey.      The project leader said, We have developed two new questionnaires which measure beliefs about suicide and nonsuicidal self-injury.        Dr Andy Siddaway

See also  Support sheet       Stirling University

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Not getting out

Learning a new skill

How do you learn to go out of the house when you’ve got agoraphobia?      Click icon to listen to a radio interview with Ellie.

NHS

The NHS section on not getting out, or Agoraphobia, gives us a pretty clear picture of  established scientific opinion.      Click icon to browse.      There is a link to treatment – including self-help tips.

National autistic society

Searching the National Autistic Society site for agoraphobia leads to a page on anxiety.     Although it is aimed at professionals It may provide some useful context.      Click icon to view.      Under the sub-heading Are autistic people more likely to be anxious? they include fear of open spaces and crowds.

They also have a handy article on Anxietyy in autistic adults.       It provides links for autistic adults and parents.

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Introduction

Just a quick tip:  perhaps you could try using one of the following statements:

  1. “I can be anxious and still deal with the situation.”
  2. “I’ll just let my body do its thing. This will pass.”
  3. “This anxiety won’t hurt me, even if it doesn’t feel good”.
  4. “This feeling isn’t comfortable or pleasant, but I can accept it.”

Experiences

Click icon to find out how others have found their way through panic attacks.        Also, someone with high-functioning Asperger’s describes their own experience dealing with anxiety.

More detailPanic attacks etc

  • What is the range of symptoms?
  • Can people with high functioning Asperger’s be severely effected by
    anxiety?      It seems so:
    – High functioning autism is associated with anxiety disorder.
    – A discussion of the link between high IQ and anxiety
  • Can virtual reality help with not getting out?      Video           Text           Research

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Support for carers

Support for carers

Lincolnswhire Council offers a broader range of support for carers.      Click icon to browse.      It includes breaks for carers.      See also:  Support and benefits for carers on the NHS website.       new

The people at Lincolnshire Customer Service Centre can help you directly or point you in the right direction as appropriate.
Phone:  01522 782224

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Carers UK

For comprehensive information on a range of benefits to which carers might be entitled, click icon and select which benefit looks interesting.

Carer’s assessments

Carers FIRST have produced  an introduction to carer assessments – click icon on the left to view.      For more detail see the Information hub menu on their website.       First point of contact is the County Council’s Customer Service Centre: 01522 782224       carersservice@lincolnshire.gov.uk

Carers UK has produced a more detailed carer’s assessments guide for adult carers of adults (over 18 years) who are disabled, ill or elderly.       They also offer a factsheet.        It has a chapter about carers of adults.        Click icon on the right to see it.

  • A carer’s assessment is an opportunity to discuss with the local council what support or services you need.
  • Are your needs the result of you providing necessary care?
  • Does your caring role have an effect on you?
  •  Is there, or is there likely to be, a significant impact on your wellbeing?
  • If you, or the person you are looking after, are assessed by the local council/trust as needing support, then you or they have a right to ask for a direct payment instead of having the support arranged by the local council/trust.

For information about Carers Allowance see:  NHS      Government.       The National Autistic Society looks at it more broadly in Benefits and care

Planning for the future

Parents may have concerns about financial provision for the future.      The National Autistic Society offers a wills and trusts phone service staffed by solicitors.       Click icon to find out more.

Money

Personal Budget

If a child or young person has an Education, Health and Care (EHC) Plan, or who has been assessed as needing an EHC plan, then a personal SEND budget can be requested.      Click icon for a factsheet from Contact.       See also NHS guide.

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See also Money 16+

Turn 2 us

Turn2us is a national UK charity providing practical help to people who are struggling financially.      Click icon to browse.      Look out for their benefits calculator.

Welfare benefits

Carers FIRST is the new name for Carers connect.      Click icon for their welfare benefits page.       More broadly, to find out how Carers FIRST fits in with Lincolnshire Carers Service see Families.

Contact has several pages about benefits.      The Disability Living Allowance (DLA) page may be the most interesting but there are others listed in the left margin too.

Official information

Housing

Housing benefits or Council tax support may be available if someone in your household is on a low income.      Click icon for specifics.

Money Matters

This is a guide for parents of disabled children who want to know what financial help may be available to them and what arrangements they may need to make to manage their children’s finances from birth and as they get older.

Family Fund

They provide grants to low-income families with disabled children.        Fill in their application form and post it to their office in York.        For more information click on the icon below.Family fund logoA representative attended a Lincolnshire Parent Carer Council coffee morning in Grantham, in 2012, to promote the scheme.

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Interest News – Tour de France

  • Tour de France: 2021:   This year Le Tour takes place Saturday June 26th to Sunday July 18th.        See  Official guide       For ITV4 coverage see  TV schedule       Daily highlights 7-8pm.       See viewing options if ITV Hub is not working well.
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  • Money for nothing – Dire Straits trubute band in Bourne, 12th Apr 2019.       Bourne CiCLE feltival men’s road race, 1st Sep.
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  • Queen on scheduled train:  This year, 2018, the queen caught a regular rail service to Norfolk for her Christmas break at Sandringham.       See pictures        In 2017 she recreated the first rail journey by a British monarch – Queen Victoria.
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  • Tour de France: 2018:   This year Le Tour takes place Saturday July 7th to Sunday July 29th, Did you know that one of the teams are using disc brakes on their bikes?
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  • General election, Thursday 8th June 2017 – Easy read manifestos
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  • Tour de France: 2016 coverage:  Stage 7 win.        In the end Chris Froome notched up his third tour win for Britain and the Sky team.        See:  Pictures         Official guide         Froome on 2016
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  • New Eurostar trains       Eurostar - Valero e320Eurostar are replacing their original French built train sets with new German Siemens trains.          There are plans to extend services to destinations in the Netherlands and Germany.          “In September 2013, Eurostar announced that its new service between London and Amsterdam, intended to begin operation in December 2016, would be operated by the trains.        The first Class 374 set entered service in November 2015, ahead of the full launch of the new type; the receipt of the safety authorization from the Intergovernmental Commission was received earlier than expected, allowing Eurostar to begin utilizing the type on a small number of services for in-service testing.”.       See Wikipedia for more information.
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  • “Einstein’s gravitational waves ‘seen’ from black holes.”       “Scientists are claiming a stunning discovery in their quest to fully understand gravity.”      See  article  complete with video clip and pictures.       In 1916 Albert Einstein predicted that gravity might be found to work like a kind of wave.       See:  PHD Comics         Wikipedia.
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  • Chris Froome wins the 2015 Tour de France cycle race.       See:  The finish       The day before.       The young Columbian runner up might be one to watch next year.
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  • A NASA space probe sped past Pluto in July 2015.      See: article – with pictures from the probe and illustrations.
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  • Steve Morse joined Deep Purple in 1994, and this recording of Smoke on the Water has a particularly good version of the guitar solo.      In the 1970’s most teenage boys knew the solo, and pretty much most of them with a guitar had a go at playing it.

Professionals

Employment

Ambitious About Autism offer a range of resources to help get more autistic people into work.      Click icon to find their Employment section.      (Skip Google adverts)       In 2021 they launched their toolkit to help support autistic young people into the workplace.

Also, the National Autistic Society has a guide to Employing autistic people.      new

National autistic society

The National Autistic Society has many pages about professional practice.       Click page icon to browse their professional practice pages or twitter icon for their Autism practice feed.      More specifically see:

Life Support DVD’s

This UK based site offers sex education DVD’s.       Click icon for You, Your Body, Growing Up, Relationships and Sex.       It is their SEND menu option.       See previews:   Kylie’s private world       Jason’s private world 

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This is a page for professionals who may be quite new to autism.        See also:  Teachers       Behaviour specialists      Autism awareness        SEN/EHC Information

Team Around the Child

As a guide, a TAC is required where two or more support services are involved.       Click icon for Lincolnshire Council guidance for professionals.

Here is a one stop resource for those in need of Teams Around a Child: Early Help Lincolnshire       Here is the TAC website establised by Peter Limbrick who developed TAC.

Training courses

Working together team

The Working Together Team offers support to schools and academies for students with a wide range of social communication and / or learning needs.        See also:  detail          SEN Support – Scroll down to Social communication outreach.

Flash Cards

Sparklebox offer free teaching aids for children with special educational needs.          Here is the Speech page.        Their terms of use are brief.

Co-ordination

Early years can extend as far as the age of 18 with ESCO.       This is short for Early years Support Care & Co-ordination,

Employment

Work from home

Working from home may sound good but finding your way into a genuine job may be difficult.      Click icon to find out more about the ins and outs.       new

Also here is a clearly presented Which guide to job scams and employment fraud.       Getting a genuine job that allows you to work from home requires extra care.

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Autistic UK

Autistic UK aim to equip autistic people with the tools to self-advocate.      They also help to equip education, health, and support services to become more accessible to all on the spectrum.      Click icon for their website.

As a community interest company (CIC) they are expected to reinvests surplus profits to do more of their work but can also pay a proportion of this out to the owners or investors.

Auticon

Auticon is another company, with a presence in the UK, that seeks to nurture autistic talent.        They are an international IT consulting business working with software and data.        Click icon for their website.        Have a look at careers         new

Adult life

Eric from Singapore has written some handy guides to adult life as someone with Asperger’s.        He addresses aspies everywhere in a readable style with insightful tips.         Click icon and browse under the Real life menu:   Basic work rules          Staying employed         Freelance jobs         Financial literacy        Working with money         Insurance discrimination

For anyone interested in the freelance jobs page, be sure to check points 1 – 3 at the bottom of the page.       Earning a bit of pocket money while living with one’s parents may be straight forward enough but it would be wise to consider the potential risks of going freelance carefully before relying on it in a big way.        Here are is a more mainstream view of avoiding  the risks.

Employment for Disabled People
Social Obligation or Individual Responsibility? 

Some people are at the high-functioning end of the autistic spectrum have achieved remarkable things, e.g. Richard Branson and probably Isaac Newton to name but two.     A significant proportion of university lecturers are said to be in a similar category.     But whatever your level of potential the law offers some protection against discrimination in the work place.

The research paper referred to below might be said to offer useful insights to those with disabilities, indicating where they stand in relation to the world of work.      The full article is pretty heavy going though, so the link below takes you into a brief outline.      Click icon to view.

Tips

If you are preparing for the world of work you could probably do with some one-to-one advice and guidance, but here are a few pointers that might help:

  • If you are high-functioning this may be reflected, to some extent at least, in your qualifications, like GCSEs.      Technical work might be right up your street.
  • Whatever your level, it looks good if you can get some work experience – however small and straight forward.     This shows to yourself and possible employers that you are getting somewhere in the world of work.       Voluntary work can be a useful start.    Anyway, it might be wise to start small to begin with and see how you go.
  • There may be some things to avoid:  maybe too much stress or work that requires particularly good people skills.   For example, teaching might not be a good idea for you.
  • If your health affects your fitness for work your GP may be able to issue you with a Fit note, stating the limitations of what you can do.      For example you may need to limit the hours that you do.

For help and advice contact the National Careers Service.       They have:

  • useful things like a CV builder etc.
  • a free phone helpline,  0800 100 900.       They seem to have a calm and relaxed manner, with no pressure.
  • online chat.

Steps to work

This is a programme aimed at parents thinking about returning to work.                 It is run in Grantham on specific dates at either Swingbridge or Belton Lane Children’s and Community Centre.       For more information click on the icon.

Sensory Sensitivity

Too much information

The National Autistic Society ran a public information campaign from 2015-18 called too much information.       It addressed concerns surrounding autistic people becoming overwhelmed with too much for their minds to process.       Click icon for the full picture.       It may help to validate your own experience.

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Sensory differences

Click icon to see an article from the National Autistic Society.      They say that many people on the autism spectrum have difficulty processing everyday sensory information.

  • It covers many possibilities.
  • Senses may be over or under sensitive.
  • Therapies are listed at the bottom
  • Further reading too

SPD

Sensory Processing Disorder is another name for the condition that you may see referred to using similar names like Sensory Integration Difficulties.      Click icon to find out about it from Sensory Integration Education (UK).

  • The Star Institute, USA,  has a couple of concisely presented pages:   What is SPD?       SPD and other disorders
  • The Sensory Processing Disorder website seems to have an international reach:  Home       Q & A – e.g.  UK mum – from a UK mother.
  • Stimming can be a useful coping mechanism for people with sensory sensitivities.      For coping with sensory overload see Why does that happen?.
  • If you are considering therapy or study on a course this scientific research might be worth a look.

Food challenges

Options Group have produced a helpsheet – Facing food challenges for those with autism & sensory processing differences.       The author is one of their specialist occupational therapists.      Click icon to view.

Quiet opticians

Lunettes in George Shopping Centre, Grantham, NG31 6LH, offers SEND friendly eye care.      Click icon for more information.

Specsavers in Lincoln High Street, LN5 7DW, held its first quiet clinic on Sunday 6th August 2017, 10am until 4pm with the next one being on Sunday 3rd September and then the first Sunday of every month,        These clinics have been planned in consultation with local support groups such as Canadda and PAACT.      Click icon for more information.

Haircut

There is no shortage of advice for coping with sensory sensitivity when getting a child’s hair cut.

A haircut technique

One barber has developed a unique technique where he will cut a child’s hair during long periods while sitting on the floor, on window sills or even in the car.       See article with video clip.

Going to the dentist

  • This article was written by an autism parent after a trip to the dentist.      The first half of this is the How Did We Get Here part.       The second is How Can You Maybe Get Here part. 
  • Many of us dread the thought of visiting the dentist but for people with autism and/or learning difficulties it can be an especially challenging experience.       See:  helpsheet

Sensory library

Linkage has a sensory toy library.      The Linkage Sensory Library is a new venture that will bring fun, learning and the therapeutic benefits of using sensory equipment to people with disabilities, including those with learning difficulties, across Greater Lincolnshire.       Click icon on the left for more information.       They have sites in Toynton, Grimsby and from September 2017, Lincoln.       They also have a touring bus.       See also website.

Ear plugs

Vibes are earplugs that are designed not to block outside noise, but to lower the volume.       Like many people with autism, Noah, From Ohio, hears noises much, much louder than the rest of us.       His father says Noah first tried them at a play, when he felt agitated by the noise.       See:  Vibes          FAQ         Amazon.       There are also alternatives.       Please be aware that GAIN is unable to vouch for any of the ear plugs.

Sensory issues

This booklet givers an occupational therapist’s view.       It addresses how to read the signs and coping strategies.

 

Asperger’s

Social skills

The National Autistic Society has set of pages about socialising and relationships with the autistic spectrum.       The page about making friends could be the most relevant.      Click icon to browse.      Also:

Asperger experts

Danny Raede has discovered for himself ways of understanding and coping with the difficulties he experiences as someone on the spectrum.        He has formed Asperger Experts to guide and support others in the same boat.       Click icon for their advice & how to page.       They also have an on-line community that you can join – see home.       See also: about

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Asperger girls

Reddit online forum has an Asperger girls page.       It has the title:  Life skills and healthy coping mechanisms for the ASD community.      Click icon to browse this page.      The questions they tackle are quite grown-up.       Their general Asperger’s page could be worth a look too.

Keran – age 33

Meet Keran Bunker, who has always struggled to keep jobs or a place to live and did not find out he had autism with ADHD until he was-33.        Click play button for his video.

Relationships

You do not have to look far to see that relationship issues are of concern to all kinds of people.        However, below are a few links offering handy insights into relationships for people with Asperger’s.

  • Article – Relationship Difficulties Due to Deficits in “Theory of Mind”  
  • Article – Rules of Effective Listening: Tips for Men on the Spectrum
  • Adult relationships – bullet points
  • Issues for partners
  • Radio programme – may well still be available to hear on-line:        Why do so many women think their men have Asperger’s syndrome?

Chat for Adults with Asperger’s

This is a website dedicated to people with Asperger’s.        Contributors tackle many topics.       Look for the Popular Posts as well as other links down the right hand side.       There is also a search box.       Below are some of the more substantial ones.

Neuro-diversity

Neurodiversity is a concept and a movement in support of people on the autistic spectrum.
It holds that autism is a valid way of being.