Category Archives: Parents

For parents of children with autism

Associated conditions

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.
  • Here is a collection of scientific presentations:  Science direct       They address Specific learning disabilities and creativity.       new

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Demand avoidance

Pathological demand avoidance (PDA) is a profile that describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent.      Click icon to find out more.      See also: PDA Society        slide show

Mental health

The National Autistic Society has a page about mental health and autism.       Click page icon to view.        Also, Autistica has produced a help sheet about autism and mental health.       Click PDF icon to view.

Here is a handy guide to Healthy coping skills for uncomfortable emotions written by a psychotherapist.         (new)

Patients may be referred to a psychiatrist for associated mental health issues.       See NHS introduction.        Ambitious about Autism has produced a guide to making the most of an appointment.

Executive Functioning

Executive functions are the brain’s self-management system.        Problems with executive function can be linked to autistic traits in later life.      Click icon for Options help sheet.       It starts with James at school.

For more examples and how to address them read about Josh in this article.

Handwriting 

Options has produced a help sheet about developing early handwriting skills for children with autism.        Click icon to view.      (new)         See also:

  • Letter dominoes is a game that is easy to make yourself.
  • Here is a video tutorial setting out several aids – including pencil grips.      It offers insight into what does and does not work.
  • 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.

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).      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

Pathological demand avoidance (PDA) – part of the autism spectrum.         Click page icon on the left for PDA society website and PDF icon for a PDA Society PowerPoint presentation.

Demand avoidance sounds similar to Oppositional defiance, so what is the difference?        In the PDF file above, page 29, it says that PDA is an autism spectrum disorder rooted in anxiety, whereas ODD is not.

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.

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 introductionchildren,   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.

Doc iconSpecific 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.

Epilepsy

Autistica has produced a help sheet about autism and epilepsy.       Click icon to view.  See also Epilepsy Action:  Website           Information         Help & support

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Related Calendar

Green Synergy

Green Synergy are putting on events at Hillside Garden, in Lincoln, for people with mental health issues from April – June.      This is part of their Better together partnership project to offer pre-employability opportunities.      Click icon on the left to find out more.
See also their website

They are also running their popular Get Into gardening course as part of their Move employability project for people interested in becoming self-employed gardeners.      Get in touch with them before 15 April for this course.      Other options may also be available.      Click icon on the right to find out more.

They have also launched a project for 10-14 year olds who want to do more for the environment and their community.      Their Green Influencers learn new skills and gain experience and confidence.      The scheme aims to make environmental social action a regular, habitual part of young people’s lives.       Sign up with Brodi: brodi@greensynergy.org.uk       Tel: 07586 777623

Virtual workshops

Check out the online workshops from Lincolnshire Parent Carer Forum, on the left.      They are free to members.       Contact workshops, on the right. are free to all.      Some workshops seek to address issues related to autism, others to foster wellbeing.

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The events on this page are chosen because they may be of interest to a child and/or adult on the autistic spectrum.         See also Local Groups for autism support groups in the South Lincolnshire and beyond.        They put on events in their area.

Worsening health

The NHS is putting on free virtual training during March to help family carers Identify early signs of worsening health in a person with a learning disability.       Click icon to find out more.

Virtual workshops

Lincolnshire Parent Carer Forum are arranging two free series of workshops on Zoom.       One is aimed at friends, relatives and carers of children or adults with additional needs.       Dates range from 5 Jan 10 Feb 2021.      It is called Waving not drowning!        Click icon on the left for Waving not drowning!

They are also putting on LPCF week of SEND.  –  from 25 Jan – 29 Jan.      These are aimed at parents and carers of children with additional needs and professionals who work with them.       Click icon on the right for poster.

More workshops

Contact has quite an extensive range of  virtual workshops for families with additional needs in Jan – Feb.       See workshops for more information.

Positive behaviour

There were a few places left as of Tue afternoon for a Promoting Postivie Behaviour and Autism Workshop.      The workshop will be on Fri 4 Dec at 9:45am and it will be online.       Click icon for details.

Lincoln conference

PAACT is taking bookings for the 22nd Lincoln annual autism conference, Mon 16 – Fri 20 Nov 2020.       Click icon for details.

Lincoln Castle

Only Lincoln Castle grounds are open to the public until 2 Dec.      Click page icon to see visitor update.       Exclusive autism-friendly Explorers sessions at the castle have not yet re-started, though, as of Sept 2020.       Next one may be in the evening.       Click castle icon for background information.

The Groove

The Guildhall Arts Centre has a few virtual events and on-line resources but The Groove has not re-started as of Sept 2020.      Click page icon to set what they have to offer.

Dysart Park Fun Day

Unfortunately Dysart Park Fun Day has been cancelled for 2020.       Click icon and scroll down to find the post cancelling all their events.

Family dog workshops

How  pet dogs can help families that have a child with autism.       Dogs for Good has workshops planned for 2020.
Click icon for locations and dates e.g.  10 Jul Lincoln21 Jul Leicester.      Check again nearer the time for Coronavirus updates.

Makaton course

The Makaton course for Friday 20 Mar at Belton Lane Children’s Centre, Grantham has been cancelled

Messy

Zoo Co presents a visual story with original music, puppets and tap dancing.        Performed by a deaf and hearing cast.       This relaxed performance, created in partnership with ADHD Foundation, will be at the Guildhall Arts Centre in Grantham on 17 Feb.       Click icon for web page or poster thumbnail.

Signposting

Lincolnshire Parent Carer Forum (LPCF) will be putting on a general signposting event on Fri 31 Jan in Hubberts Bridge, near Boston.
It will be free to parents and carers.         Click icon and scroll down for details.        See map

Mental health engagement

Give Lincolnshire NHS your feedback on mental health community rehabilitation.         Click icon  for dates in January around the county.

Cinderella

Polka Dot Pantomimes are performing another season at the Guildhall Arts Centre theatre in Grantham.       Click icon for information about relaxed performances.        They are scheduled for 2nd Jan 2020 at 2pm & 6:30pm.         Phone the booking office using (01476) 406 158  for available seats at:  6:30pm       (2pm  seats sold out.)

Farm quiet hour

Rand Park Farm, near Lincoln, will be putting on a quiet hour for children with additional needs and their families.        Date: 14th Dec, 9 – 10am.        See map        farm layout

Making sense of the senses

Free conference with Dr John Biddolph on Wed 4 Dec at The Fleet, Peterborough.       Click icon for more information including booking details.

Autism Conference

PAACT is taking bookings to attend and for information stands for annual conference in Lincoln on Tuesday 19th Nov 2019.
The venue will be The Showroom, Tritton Road, Lincoln, LN6 7QY.        Click icon for poster.        See also map

Lincoln Castle Explorers

An exclusive opportunity outside of opening hours for children and adults on the autistic spectrum to visit with their families.        Lincoln Castle Explorers, 2nd Nov, 9am – 10am.        Click page icon for event details and to book or castle icon about autism-friendly opening.        See map.

Makaton course

An early years specialist will be running a Makaton course on Friday Oct 4th at Belton Lane Children’s Centre, Grantham.       It will run from 9.30 – 12.30pm and then 12.30pm until 3.30pm with a working lunch.       She will cover Level 1 in the morning and Level 2 in the afternoon.      The cost is £15 per level payable to the trainer on the day.        Morning session recommended for parents.       If you would like to attend contact: ella.mayfield@lincolnshire.gov.uk         See Speech & language about Makaton.

Signposting

Lincolnshire Parent Carer Forum (LPCF) will be putting on a general signposting event on Wed 30 Sep in Market Rasen,        Click icon for details.        See map

Harrowby football match

Harrowby vs Cottesmore football match on Saturday 14 Sep at Harrowby United’s Dickens Road Community Stadium, Grantham, NG31 9QY.       Free entry for under 16’s and carers with Carer’s Allowance letter.        See also map.

Dysart Park Fun Day

GAIN will have a stall at The Dysart Park Fun Day again this year, on Sunday 7th July 2019, 11am to after 4pm.       See::  Facebook      map.

We would be grateful for any donated tombola prizes – old toys, books, food/drink, plants, trinkets, toiletries, teddies, etc (we won’t turn anything down).        Please contact GAIN at
(01476) 855 070 to arrange to drop off or collect.        Thanks to everyone who has already donated prizes, including:  Poundland, Home Bargains, The Works and Subway.

Makaton course

An early years specialist will be running a Makaton course on July 5th at Belton Lane Children’s Centre, Grantham.        It will run from 9.30 – 12.30pm and then 12.30pm until 3.30pm with a working lunch.        She will cover Level 1 in the morning and Level 2 in the afternoon.       The cost is £15 per level payable to the trainer on the day.

Healthy Conversation

The NHS will be holding public engagement drop in sessions around Lincolnshire during May and June.       They want to take soundings about the future of local  health services.

Family dog workshops

Workshops for families with children diagnosed with autism in Lincoln on 7 Jun.       Click icon for details.        See Growing up about Dogs for Good.

Signposting

Lincolnshire Parent Carer Forum (LPCF) will be putting on a general signposting event on Wed 22 May in Lincoln,

Overcoming trauma

Hesley are putting on a free event for parents about overcoming trauma and building resilience for people with autism.        It will be on 8 May in Nottingham.        Click icon for details and to book.

Easter Quest

An exclusive opportunity outside of opening hours for children and adults on the autistic spectrum to visit with their families.        Alice in Wonderland Easter Quest at Lincoln Castle.        Follow the white rabbit and seek out the clues to solve the Mad Hatter’s riddle and claim your chocolate reward.        Sat  20th Apr, 9am – 10am.        Click icon for more information.

East Midlands events

Workshop for parents of special needs children – Coping with Challenging Behaviour.       Wed, 3rd Apr, 10am – 12pm.        25 FREE places available for parents.        At Voluntary Action Rutland, Rutland Community Hub, Oakham, Rutland, LE15 6RB.         To book your free place email westmids.office@contact.org.uk with your name, address and telephone number.        Please also state the age of your child with special needs, and the nature of his/ her disability.        Click poster preview to view.

TV/Radio blog

Stand up comedy

Ria Lina does some aspie stand-up on The Now Show.      Click icon to listen – 8 minutes in.

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Sensory overload

Paris Lees hears from two women learning to cope as they deal with the complexities of human touch.      Sarah is an autistic mother with touch sensitivities.      Click icon for the podcast.      See also article about Sarah.

The life scientific

Research psychologist Francesca Happé talks to Jim al-Khalili about the abilities of people with autism.       Click icon for the podcast.

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 mins to skip car theft and find the phone-in.

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 premiered 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.      The link features an article followed by comments.

The first episode was dissapointing for one viewer.      In this article actor Mickey Rowe explains why he thinks Netflix’s series Atypical misrepresents its autistic audience — and why that begins with its failure to include the autistic community in its creative process.

Lucy Mangan on Responsibility

Click icon to listen to this intelligent and engaging interview.       Lucy Mangan 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 just got on with it until one day, when she was sixteen, it all caught up with her.      She says it is like shaking up a bottle of fizzy pop: ‘it’s got to come out some way’.

More or Less

The Radio 4 series that goes behind the numbers in the news.      For example,  in the Brexit referendum of 2016 the UK has voted to leave the European Union.      Click Brexit economics to listen to Tim Harford and the team explore what that might mean for the UK economy.      Click icon for more episodes.

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.

Men & Asperger’s

Asperger’s syndrome or not?  may still be available to hear on-line.     Why do so many women think their men have Asperger’s syndrome? 

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.

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.

Things to help

Social stories

Social stories for kids with Asperger’s can help to teach basic social skills in a simple and direct way that they can understand.       Click page icon to find out what they are, how they help and how to write your own.       Also:

  • Social stories were created by Carol Gray in 1991 in Michigan, USA.      Her website offers a wealth of sample stories.
  • Successful Social Stories, by Dr Siobhan Timmins, contains guidance, illustrations and examples.      See Amazon       Good Reads.       Find preview by clicking Look Inside on the Amazon page.      The author is based in Essex.
  • This is a book of containing many social stories – The New Social Stories book (2015).      See:  Amazon       Good Reads.       Have a look at four examples by clicking Look Inside on the Amazon page and then clicking First pages in the left margin.
  • Youtube has quite a few videos about writing your own social stories.      There are a few ready made stories too, like It’s OK to Back Away.        new
  • Pixabay might be a handy source of free images for social stories.

Amazing things happen

Click play button for a video for children explaining autism.

Using technology

The National Autistic Society has a guide to using technology for parents.       Click icon to view.

Computer games are said to be beneficial for children on the spectrum.       Here are three web links, the first offering help in choosing games and the second offering a self-contained experience with the games on the site.

  • Learning Works for Kids is a site based in the USA.       It identifies computer games that they say help with particular learning or life skills.       The Find Games or Apps menu option takes you to their search page.      This is free to use.       The approach is said to draw on original research and decades of experience in education and psychology – see their About page.
  • Autism Games is a website created by a university and an eTherapy centre in Australia.         It is free to use and it aims to assist children with moderate to severe autism to develop independent living skills.       Click on website and hover over the Games menu to see what is available.       Click the Whiz Kids Games link on their home page to play the games.       You need to have Adobe Flash on your computer to play the games.      Take care to use the Adobe website to install to keep your computer safe.      But if you are not sure about any of this please ask someone who understands computers for help.
  • Pokemon Go has been the subject of a lot of bad press.       This story, though, of a 6-year-old boy called Ralphie, is a notable exception.         See article.

Fidgeting

  • Fidgetbum is designed to keep bedding in place during the night.      The website is well presented.
  • Bouncy Bands look like an interesting idea for children with fidgety feet.          It gets the thumbs up from a teacher in the UK in principle.         Amazon UK stocks them.       Probably wise to check the reviews for the items that have them.
  • Do you fidget at your desk?        Here is an article about a fidget cube.        See Amazon.

Aukids magazine

A magazine offering information, encouragement and support for parents of children with autism spectrum conditions.       For four issues a year, AuKids costs £15 per year and includes access to a downloadable archive, too.      Click icon for their website.       Visitors can get a good idea what they contains from the sample issues in their Library section.      The website and publishers have a UK address.

Special clothing

Children with autism often have sensory issues.      They may be fussy about the clothes they wear, for example.      Hear is a list of some of the suppliers of specialist clothing .

Some children with autism may engage in fecal smearing.       Click on this  forum  to find out how mothers tackle the problem.      Hear is a list of some of the discussion  and supplier sites of specialist body suits.

Coronavirus resources

Easy read

Mencap has several easy read guides for the life under current Coronavirus restrictions.      Click icon to browse.      Maybe the vaccine page might be of particular interest.

See also UK Government:  Road map out of lockdown       Census 2021

Support for carers

The government and the NHS has produced a Covid-19 carer support letter to identify yourself as a carer in shops etc.      Click icon for more information and to download the letter.

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For online workshops see: Related calendar         More resources:

Health

The NHS continues to update its Coronavirus page.       It is straight forward to browse.      Click icon to view.

Government guidance

SKDC has launched its Covid community information hub.       Click icon to get the latest for the Grantham area.

  • Phone: 01476 406177 / 406358 : 8am – 7pm
  • Email:  SKCommunityHub@southkesteven.gov.uk

See also  for the UK government’s complete Guidance and support

Resources and updates

Here is a collection of resources and updates for the current situation from the National Autistic Society and others       Click icon to browse.

Scams

Covid has changed many things over the past year and scammers are seeking to take advantage.      Click icon to read about it.

Social story

Here is a social story about seeing people with face masks.        Click icon to take a look.      If it is not just what you want, does it give you any ideas?      See also: how to write your own         free images

Face coverings

Professor Ellen Townsend makes a plea for compassion for those who cannot wear face coverings.       She outlines the many reasons why some people may not be using a face covering.       Professor Townsend leads research at the School of Psychology, University of Nottingham.
Click icon for article.       See also:  Mask anxiety

Lincolnshire heritage & culture

Lincolnshire County Council have a number of short stories from long ago, produced by Lincoln Castle, on Youtube.       Click icon to see the list.

Wellbeing 2021

See Related calendar to find pre-employability opportunities for people with mental health issues at Hillside Garden, Lincoln between April & June.

Hopelinks

Hopelinks is launching SIRs, a social Isolation responder phone service.       It aims to give carers and people in general the opportunity to chat, often unburdening themselves, in a friendly setting.      Click icon for the brochure.

Ask an autistic

A ladies’ community group plans to launch a blog on 31_March.       Send in your questions to darkside.risingcic@gmail.com or log in to their Facebook page.      Click graphic for an introduction.

Emotional wellbeing

There seem to be some new  resources and services developed to support for emotional wellbeing and mental health in Lincolnshire.       Click icon for GAIN guide.      See also:  Lincolnshire recovery college

Parent to parent

The National Autistic Society has set up a Parent to parent emotional support helpline.       Phone them or fill in an online form to request a phone call.       Click icon to find out more.

Shine

Shine put out a newsletter in 2020 that addresses some issues of current interest.       Click icon to browse.

Shine Lincolnshire, the mental health support network, are putting on virtual coffee mornings for carers in Lincolnshire.      They are regularly on Mon, Wed & Fri on Zoom.      See how they work.      Their website has details about all the latest events.

Shine aims to put people with mental health issues in touch with sources of support.      See Shine basics

Gardens

The Friendly Garden is the location for a range of garden related events organised by the Sage Gardener.      They have made changes to the way they do things to make events COVID safe, when restrictions allow.       Click icon to find out more.

Education 2021

See also:  Take part in research

Education & childcare

This is where the UK government sets out the up-to-date information and guidance to parents, carers and professionals for education, universities and childcare during the Coronavirus outbreak.      Click icon to browse.      In particular for:  Parents & carers       It gives Mon, 8_March as the return date for schools.

Here is a handy summary of how that is expected to work.      Look for the section on England.

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Online learning

The National academy is a free online classroom made by teachers, for teachers.      Click icon to browse or get started.      The official name is Oak National Academy.      See also:  About Oak       Wikipedia

BBC Bitesize s currently aiming its free online interactive resources at the lockdown situation.       So what is Bitesize and how do you use it?        See: About us         To browse or get started select:  Bitesize

Education technology

There is a range of help available to access remote education to those who qualify.       Parents cannot apply directly but need to contact schools to get help.      Click icon to find out more.       For example data allowances for mobile phones.

Parents 

The National Autistic Society has set out guidance for parents of children on the autistic spectrum about the return to school.      Click icon to view.      Perhaps this directive to schools about support of SEND pupils, dated Sep 2020, may still be of interest.      

Lincolnshire Parent Carer Forum seem to do quite a bit of what you might call heavy lifting.      Click icon to see their Coronavirus articles on the right hand side.

Ambitious about autism

Ambitious about Autism has a section on Coronavirus and autism.      The education page includes a couple of pages on returning to school, dating back to June 2020.

Also, the Coronavirus resources page has some easy reading downloads.      Click icon and look for:  Coronavirus and autism | Ambitious about Autism.

Key terms

Here is a table of school years and ages:

Family support

Contacts

The Earlybird contact for the Grantham area is based at Gosberton House Academy near Spalding.       Click icon for details.       Email enquiries or Sharon.Oldfield@gosberton-house.lincs.sch.uk  or  phone the school at  01775 840250  and leave a message for Sharon.       See NAS to check.        updated

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The National Autistic Society (NAS) offers training for a range of local support programmes aimed at parents and carers, offering advice and guidance on strategies and approaches to working with young autistic children.       They include:

  • EarlyBird
  • EarlyBird Plus
  • EarlyBird Healthy Minds
  • Teen Life

Click icon above to find out more.

Alternatively …

Looking for something a bit more casual?       If your child is pre-school you could try KIDS’ Crèche first – once childrens’ centres re-open after Covid.

Take part in research

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.

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

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)

Non-compliance behaviour

Button - playCould 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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Wider Area

North Lincolnshire

The Carers’ Support Service is a charity that serves North and North East Lincolnshire.       Click icon then select your region to browse.      They have a page for young carers in North East Lincolnshire.

See also: SEND for North East Lincolnshire Council.

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There are some county-wide services in Lincolnshire and the surrounding area.      See also More information for Lincolnshire Autism Partnership Board.

Lincolnshire Autistic Society

The society offers information on Autism, support groups and county updates.         They organise a conference each year, in March – see Related events.       It is very well attended and GAIN is regularly represented there.

Click icon above to view the society’s website, including contact details and up-coming events.       The site was launched in August 2015.

Lincolnshire Parent Carer Forum

This is the new name for Lincolnshire Parent Carer Council.      They are an independent small charity run by volunteers made up of parent carers of children with special educational needs (SEN) and disabilities.      See FAQ for more about them.

Click icon for their home page and see what is happening in Lincolnshire.

SEND

Special Educational Needs and Disability (SEND) provision was reformed in 2014.              Education, Health and Care (EHC) plans are for children with complex needs.         See:

  • Cambridgeshire for more information about SEN in Cambridgeshire.                See also EHC
  • Leicestershire for more information about SEN in Leicestershire.                       See also FAQ
  • Nottinghamshire for more information about SEN in Nottinghamshire.            See also Support

Autism Links

Find charities, support groups, and specialist service providers in your part of the UK.         They also offer information and resources.        Click icon to search or browse.

Nottinghamshire

  • Here is an introduction to local support groups in the Nottinghamshire area.                  It includes several in Nottingham city and suburbs.
  • Autism East Midlands aim to to ensure people with autism can live their lives with dignity, choice and independence – see About us.       They do a lot in Nottinghamshire, particulary in the Nottingham area.         Have a look at Family services.        They have Family support hubs in Nottingham and Newark.          For their Home page click icon on the right.        Once you are in the Family Services section, navigate via the left hand column for specific geographic locations.         Here are their  Admission criteria  and  Application form.        See also Adult support under Autism East Midlands.
  • With Family Support Directory visitors can search a large database.         After an initial search there are options down the left hand side to narrow things down.               Alternatively, the Search option along the top of the page offers a list of categories.
  • Nottingham Autism Support Services offers a range of paid-for services.        As a group of ex teaching assistants working in special education, the founders recognised the need to have professional, properly qualified and experienced staff to work with people on the Autistic spectrum.

Leicestershire support

  • Leicestershire Autistic Society is a volunteer led organisation.       See website
  • Leicestershire Support for Carers is a community based organisation run by Voluntary Action South Leicestershire.         See Website          See also In Your Area, e.g.  Organisations in Melton
  • ADHD Solutions is an independent initiative that works across Leicestershire and Rutland.       They aim to improve the life chances of children, young people and adults.        See website
  • Get the right help for adults with a learning disability.       The Leicestershire Learning Disability Partnership Board has a page about Living independently at home.

Handy links

Autism Links