Our aims

This website aims to point people to sources of information and support that might help with the following:

• Parents and carers may want to find out about the nature of the autistic spectrum.
• They may be looking for ways to support their children or young people in coping with the challenges of life and in reaching their potential.
• Experiences of other parents and carers may help in getting a better idea of how things work.

The menus

Hover over menu options at the top of the page to see the list of sub-menus.        Below is a guide to the menu content with a few key page short cuts.

• The Adults section is aimed primarily at adults on the autistic spectrum, their parents and carers.        The Resources section would also be worth a look for this group.        Some pages may also be of wider interest.
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• The Events section provides information about events we at GAIN put on plus some other events activities and services that may be of interest.        They are generally in the Grantham area and all are in the UK.
  
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• The FAQ section is intended to offer introductory and quite easy reading material.
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• The Resources section offers a guide to the information available to parents and carers, primarily of children with autism.         It also points to sources of guidance and help and support.         Quite a bit of it is specific to Lincolnshire, notably in Resources and SEN.
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• The Wider Area section covers support groups activities and services in Lincolnshire and touching on Nottinghamshire, Northamptonshire and Leicestershire.
  
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• The Teen Scene section is an on-line magazine aimed at adolescents and teenagers.        It aims to help readers to wind down and broaden their range of interests.

Keeping up to date

The RSS menu below offers lists of recently updated pages or recently created posts  (Events option).        The idea is to make it easier to keep up to date with this site.        If there is a problem click help icon on the right for our updates guide.

The list of recently updated pages below combines the Adults, Parents and Students categories.

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Universal credit

Contact has produced a page about Universal Credit.        Click icon on the left to view.       They have also launched a campaign about Universal Credit called Counting the cost.        The aim is to stop the cut in benefits for disabled children it represents.        Click icon on the right for details.

They also have a helpline.         There are four ways to get in touch with Contact:                              See Facebook, Twitter & email queries

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See adult Care & Support about Carer’s Allowence for carers of adults.

Benefits news

• Inquiry into disability benefits, led by Frank Field, ‘deluged’ by tales of despair.           Several themes emerge from the testimony heard by the work and pensions committee.           See article.
• Exemption from re-assessment for Employment & Support Allowance (ESA) is not as expected.            People with life-long or severe disability will only be exempt if they are deemed to be unfit for ‘work-related activity’.              See article.
• Get the lastest on the benefits system.             See Disability news            e.g. Call for action

Money Matters

This guide has been prepared for parents of disabled children who want to know what financial help may be available for them and what arrangements they may need to put in place to manage their children’s finances from birth and as they get older.

Benefits adviser

Carers First is the new name for Carers connect.         They have a dedicated benefits adviser.        He offers free advice to carers, including parents in a caring role, under the age of 50 and living in Lincolnshire.         He is very approachable and has professional experience of the benefits system.        In this role, though, he is completely independent of the government and does not work for a government agency.

• See benefits  or look for Information -> Carers Rights on home page.
• Contact Lincolnshire County Council’s Customer Service Centre, Monday to Friday, 8am – 6pm, by calling 01522 782224 or emailing carersservice@lincolnshire.gov.uk
• For more about Carers FIRST see Resources.

Carers UK

For information on a range of benefits see Financial support.

Official information

Lincolnshire County Council publish information on benefits and finance in their Family Services Directory.            See:  Family-benefits             DLA-for-children          DLA-&-PIP-for-youth           PIP-for-ages-16—64  – see also below           Money-Advice

Also, for information about Carers Allowance see:  NHS        Government.

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.           See outline for Lincolnshire.            It contains links to a number of relevant articles.

Personal Independence Payment (PIP)

This is the replacement for DLA for people aged 16-65 with a disability or long term health problem.       It has been in the process of being phased in since 2013.

• Citizens Advice offer a large number of pages about PIP, all neatly arranged to make it easy to find your way around.
• The National Autistic Society (NAS) has published an series of pages on the new benefit.      They also have a list of related pages.
• If you want to see what the government has to say about it, you can choose from Overview,  Detail and News.

Benefits & community care

The National Autistic Society provides a sound introduction to benefits
in relation to community care.

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.A representative attended a Lincolnshire Parent Carer Council coffee morning in 2012 to promote the scheme.

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Children on-line

BBC Radio 4 had a phone-in about protecting children on-line in Jan 2019.        Click icon for the podcast.        Drag along timeline to 12:43 to find the phone-in.

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Autism & communication

Michael Rosen finds out about communication with people on the autistic spectrum.             Click icon to listen on iPlayer.  

Atypical

Click icon to find the trailer for ‘Atypical’, Netflix’s new comedy series about autism.            It premiers in August 2017.          The eight-episode comedic series follows Sam Gardner, a high school senior on the autism spectrum, and his family as he navigates dating, school and being a teenager.

First episode dissapointing for one viewer.            In this op-ed, actor Mickey Rowe explains why Netflix’s new show Atypical misrepresents its autistic audience — and why that begins with its failure to include the autistic community in its creative process.

Another was happier.         For me the series is based on a extremely high functioning autistic individual. He goes to mainstream school and is achieving top grades.       He is very articulate and has a job outside of school plus a girlfriend. This for me is the dream outcome.      Many autistic and sensory traits were spot on.      Also the family dynamics were true and realistic.      I chuckled when the parents went to the support group and the dad kept being corrected on his use of language … 

Lucy Mangan on Responsibility

Click icon to listen to this intelligent and engaging interview.         Lucy Mangan feels she avoids responsibility whenever possible.  But she’s always been fascinated by those who run towards responsibility rather than away from it.  She talks to Bea Harvie, a post-graduate student, whose father got ill when she was thirteen.  Bea chose to take on a lot of caring duties towards her younger siblings while her Mother was busy caring for her Father.  She describes the experience as something she just got on with, and reveals that it also was a useful distraction from dealing with her own feelings about her Dad’s illness.  Until one day when she was sixteen and it all caught up with her.  She says it’s like shaking up a bottle of fizzy pop: ‘it’s got to come out some way’.

More or Less

The Radio 4 programme that goes behind the numbers in the news.          For example,  Following a referendum, the UK has voted to leave the European Union.       Tim Harford and the team explore what that might mean for the UK’s economy.          
For example see Brexit economics             Click icon for more episodes.

The A-Word

The acclaimed international six part drama series will premiere in the USA on Wednesday July 13th on Sundance TV, 10pm Eastern time, 9pm Central.

Lack of empathy

How far can empathy, or the lack of it, can explain cruelty.           Simon Baron-Cohen proposes turning the focus away from evil or specific personality disorders, and to understand human behaviour by studying the ’empathy circuit’ in the brain.          Also speaking:   forensic psychotherapist Gwen Adshead, crime writer Val McDermid and  philosopher Julian Baggini.          Click icon to listen again to this discussion.  

The A-Word

Autism family drama on BBC1 TV.          Concluding episode on 26th April Episode 6.        Tuesdays 9pm.          See also:  Video clips           GAIN post.

Men & Asperger’s

A radio programme may still be available to hear on-line:      Why do so many women think their men have Asperger’s syndrome?           (As of Jul 2016)

Dr Digby

In Holby City, Tue 3rd Nov, matters have come to a head for Dr Digby and he is experiencing a crisis of confidence.            His lack of people skills is getting in the way of his work as a doctor.               Dr Hanson has plans for him, though.              We will have to wait to find out what they are, and it could be several episodes before we do.               Still, it might be worth keeping an eye out to see what next Tuesday will bring.

Codes that changed the world

If you are a computer buff you might be interested in a Radio series about the history of computer programming.              One episode, about BASIC for example, was aired on Wed 8th Apr 2015.             You might be able to download the Podcasts of these programmes – still available Apr 2016.

Interviews about Autism

Radio 4 has been broadcasting a series of interviews about Autism.

• A conversation with Professor Simon Baron-Cohen was aired on Tue 17th Feb 2015.            He is a highly respected authority on autism.
• On Tue 24th Feb, an interview with a university research assistant with high-functioning autism was aired.       She explained her experience of life with very clearly.

You might be able to listen to Podcasts of these 15 minute programmes.          They should be available for at least 30 days after broadcast.               This one has stayed there for months.

Casualty

29 November 2014.    Move over Dr Chao, Dr Keogh is back.        Dr Lily Chao made her entry to the hospital drama series giving everyone around her short shrift.        Now Dr Dylan Keogh has made a comeback.         Someone asked him, “Do you always treat people like that?”.         “Yes” was the curt, perfunctory reply.

The Village

August 2014.     The plan is to cover the 20th century from the First World War to beyond the Second World War, over several series.          The mood is perking up now.

Casualty

The episode on 9th August 2014 featured a very convincing and  well crafted depiction of a teenage boy with autism.       He took a liking to someone playing Eric Clapton on the street.       It could be interesting to know that autistic people are represented on mainstream TV.

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Does your son or daughter have difficulty explaining themselves to others?

A Neuro-diversity ID Card or Wristband might help.       Although they are based in Linocoln, Canadda have extended their free Neurodiversity ID service to parents of young people on the autistic spectrum in the Grantham area.       For information click PDF icon.

Click page icon to find an application form.         Please be aware that an autism/aspergers diagnosis is needed in order to apply.

Canadda contact details are below.

• 01522 716899
• debbie.canadda@yahoo.co.uk

Introduction

• Is not getting out, or Agoraphobia, related to Asperger’s?     Quick answers       Thorough answer
• The National Aautistic Society have a handy article on    Anxietyy in autistic adults.
• What is Panic Disorder?     Panic attacks & Asperger’s         Further reading         These links cover treatment too.
• What does the NHS offer?         NHS treatment            This page includes self-help tips.

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

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

Experiences

• Someone describes their own experience.

More detail

• 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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Please be aware that we, at GAIN, are not qualified to give advice.              See disclaimer.

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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.

SPD

Sensory Processing Disorder is the newest term for the condition that you may see  referred to using similar names like Sensory Integration Difficulties.            Click icon to find out about it.            See also:  What is SI?         Conferences – UK        Star Institute          What is SPD?          SPD and other disorders           Q & A – e.g.  UK mum

Quiet clinic

Specsavers in Lincoln High Street, LN5 7DW, will be holding its first clinic on Sunday 6th August 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.

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For coping with sensory overload see Challenging behaviour.

Sensory differences

Click icon to see an article from the National Autistic Society.               It covers many possibilities.              Many people on the autism spectrum have difficulty processing everyday sensory information.       Any of the senses may be over- or under-sensitive, or both, at different times.

Too much information can cause stress, anxiety, and possibly physical pain.       This can result in withdrawal, challenging behaviour or meltdown.

Some people say they find coloured filters helpful, although there is only very limited research evidence.

Haircut

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

• The problem
• This weekend my boy let me cut his hair – after 3 years of preparation.             See example.
• Preparing for a visit offers plenty of tips.
• Calming Clipper is a hair cutting kit for sensory sensitivity.

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.

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Please be aware that we, at GAIN, are not qualified to give advice.              See disclaimer.

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Alexithymia

A condition involving lack of empathy.         A difficulty in experiencing, expressing, and describing emotional responses.         Some with autism have this lack of empathy but many do not.        Click icon for an easy reading interview.        Professor Geoff Bird says that alexithymia and autism are independent of each other.

For detailed and definitive information see:  Alexithymia info 

Dyslexia

Dyslexia is a common learning difficulty that mainly affects the way people read and spell words.        Click icon for an easy reading introduction.         Scroll down for comments.

• For more detail, see  British Dyslexia Association  (BDA).         Includes FAQ.        They also have resources for parents.         And much more …
• See Dislexia outreach for support in Lincolnshire.        They support parents, teachers, and pupils.
• See also under handwriting aids below.

Demand avoidance

Echolalia

• Here is an introduction to echolalia.        Mimicry is an efficient way to experiment with different sounds and practice emerging social language skills. 
• This article offers a medical analysis.        People with echolalia repeat noises and phrases that they hear.      They may not be able to communicate effectively because they struggle to express their own thoughts.         If they struggle to do anything other than repeat what has been said, they may have echolalia.         Some children with autism are regularly tested for this during their speech lessons.
• Here is a more detailed article about echolalia with autism – Even echolalia is a normal way to learn language.        Most children use echolalia to learn language.         The majority of children babble in a rhythmic way, which is actually mimicking the cadence of our language. 
• In adults – Echolalia should normally disappear around two and half years of age.         It is often considered abnormal if it persists beyond age 3 years.

Dysgraphia

Dysgraphia is having difficulty learning to:     1. recognise and write letters and words       2.  link sounds, speech and writing.

• For an easy reading introduction, see  About Health.           See links for more detailed information.
• This dedicated Dysgraphia website has been written by a mother and university lecturer, and an undergraduate with dysgraphia.

Dyscalculia

Dyscalculia is a specific difficulty with arithmetic, or maths.

• The Dyscalculia website looks pretty definitive.           It offers a handy introduction
• For more information see Dyscalculia Talks.         It has articles to read as well as video clips to watch.
• The Dyscalculia Conference website is aimed at professionals, but might be interesting to anyone teaching their own child at home.

Dyspraxia

A Developmental co-ordination disorder.

• For an easy reading introduction, see  NHS Choices.          Scroll down for comments.
• The Dyspraxia Foundation has a great deal to offer, including introduction,  children,   FAQ.         See also:  Home for helpline and  Local groups – including Leicstershire and Peterborough
• You may be surprised to learn that it can affect speech, see Speech and Language.

Handwriting aids

• Fun to write “A simple step by step approach to encourage the correct method of forming letters and numbers and to develop writing skills.         Contents:   6 reusable writing cards, wipe-off pen, pencil, half-plain half-lined pad and guide.”         Amazon may be more familiar but maybe no cheaper.
• Ultra pencil grip might be helpful to some children.         This cheaper pack with just 3 grips looks similar.        Note that some packs are for larger pencils.          Triangular grip  is another option.        There is also a mixed pack if you want to try several types.           This discussion mentions their use among.
• Here is a video tutorial setting out several aids – including pencil grips.
• This video tutorial demonstrates the sock method of teaching proper pencil grip.
• This video tutorial demonstrates writing 3 letters of the alphabet. There are more related videos in the margin, too.
• Some mums provide a sloping board/surface to write on.
• Letter dominoes is a game that is easy to make yourself.

Specific Learning Difficulties

SpLD is an umbrella term used to cover a range of frequently co-occurring difficulties, more commonly:

• Dyslexia
• Dyspraxia / DCD
• Dyscalculia
• D.D / A.D.H.D

Specific Learning Difficulties (or SpLDs), affect the way information is learned and processed. They are neurological (rather than psychological), usually run in families and occur independently of intelligence. They can have significant impact on education and learning and on the acquisition of literacy skills.

In general, a student may be diagnosed with a SpLD where there is a lack of achievement at age and ability level, or a large discrepancy between achievement and intellectual ability.

See also an analytical view

Tourettes

Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics.        See introduction

• Tourettes Action website seems to be the go-to place for all things Tourettes.        Click icon on the left to browse.         They have a Find support menu.
• The Lincolnshire support group meets in Lincoln and Grantham.
• Discussions :  Netmums         Tourettes & Aspergers
• Facebook videos might be worth a look.

Swallowing difficulties

Click icon to view help sheet for people with Autism about Dysphagia by a speech and language therapist.

More conditions

Here are a couple of help sheets about epilepsy and mental health for people on the autistic spectrum from the UK research charity Autistica.

See also Epilepsy Action:  Website             Information           Help & support

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Please be aware that we, at GAIN, are not qualified to give advice.              See disclaimer.

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