Category Archives: Parents

For parents of children with autism

Diagnosis and school

We, at GAIN are not qualified to give advice but here are a few thoughts.

If you think that your child may have Special/Additional Educational needs (SEN), you may need to find someone who will take the time to listen and discover for themselves what your child is like and what he or she needs.

It might have taken you years of devoted attention to piece together your own insights and it may take some time for others to catch up with you.       It might help to keep things factual, describing the specifics of what is happening, and leaving the professionals to join up the dots.


Ambitious about autism has produced a toolkit called Right from the start.      Click icon and look for Parent toolkit under the adverts.       Maybe filling in checklists might help to clarify things and help to communicate them to others.       Look for Appointment Checklist – based on questions GP should ask.        Here is Understanding your child checklist.

Mentioning autism

PAACT support, in Lincoln, made a similar point in 2017 about not mentioning autism initially.      Alarm bells may well start ringing for service providers when autism is mentioned because there is a lot of demand for SEN resources.       Click icon for their letter about diagnosis in Lincolnshire and scroll down to grey text.      It offers a description of two ways by which the process of diagnosis may be started – referral by a doctor or a school.


  • The National autistic society recommends that a child’s teacher keeps a behaviour diary of any signs that may indicate the need for a formal diagnosis.     
  • They say that it is not unusual for GPs to request observations from schools before making a referral.
  • Your child will need a diagnosis to get funding for SEN support.

Autism assessment

The NHS website outlines what an autism assessment involves.      It mentions a SENCo referral, unlike some other websites.       Click icon to view.       It looks like one may not always be able to avoid mention of autism before diagnosis.       Maybe it might be wise not to mention it from the outset at least, though.

They also have some very handy tips for getting diagnosed.


Getting what your child needs often puts parents up against difficulties and obstacles.       Professionals may try to fob you off to begin with, suggesting that things might sort themselves out – perhaps partly because they do not see your child at home.

  • Ambitious about autism says that some parents of children with autism develop a talent for making a polite nuisance of themselves – formally known as advocacy.      Find How do I get a diagnosis under the adverts.
  • Also, there are waiting lists for much needed services and the solutions may not be easy to identify.

Where next?


If things are not working out at school Springwell Alternative Academy or Pilgrim School may be an option.       See Wider area schools.


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.       updated

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.


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.

Official information

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.


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.


Changing care

NHS reforms

The NHS Transforming care agenda has been aiming to support autistic children and adults in the community rather than inappropriate inpatient units.      Click icon to read about it.

Autism Strategy

The government started developing an autism strategy in 2009 following on from the Autism Act 2009.      The aim was to ensure that adults with autism get the help they need, such as help getting a job or help at home.       Click icon for the National Autistic Society headlines for the 2021 updated strategy.      (updated)

  1. The first Autism Strategy was published in 2010 with the title Fulfilling and Rewarding Lives.       Then the government asked for feedback in 2013.
  2. The second strategy was published in 2014 with the title Think Autism.
  3. The third covers 2021 – 26.      See: National strategy       web page

Lincolnshire County Council have published some documents outlining their plans for following the strategy locally for 2019 – 22.      See Lincolnshire strategy       web page

NHS reforms

Transforming care

In 2015, NHS England published a new national plan under the ‘Transforming Care‘ agenda, called Building the Right Support.
The plan was for autistic people not to live in inappropriate inpatient units, such as assessment and treatment units or other mental health units.
Instead they should be supported in their communities, closer to their families and friends.       Click page icon for a National Autistic Society (NAS) 2016 article or PDF icon for the 2015 NHS plan.      See also comment on the funding plans.

Parliamentary debate

Progress of the agenda was debated in parliament in 2018.      Several MPs raised the challenges faced by autistic people who are stuck in mental health hospitals, highlighting that the number of autistic people in these hospitals has increased during Transforming Care.      Click icon for article


A 2019 interview with Carole Buckley may be of particular interest.       She is a retired GP who has and autistic son and is the Royal college of general practitioners clinical representative for autism.       Click icon for interview.


  • A report by the Children’s Commissioner for England in 2019 says that too many young people are being admitted to secure mental health hospitals unnecessarily and are spending years in them.       See ITV News
  • The NHS has announced that autistic adults will be included in a new and expanded learning from life and death reviews programme (LeDeR), which aims to improve health and care services.       See  article      2021
  • Number of autistic people in mental health hospitals.       See  latest data      2021

Casework service

Due to on-going difficulties with mental health services, in 2020 the NAS launched their own Autism inpatient mental health casework service.      It offers confidential advice and support for autistic people at risk of going into inpatient units or stuck in them.      Click icon to find out about it.

SEN/EHC Information

Complex needs

The Challenging behaviour foundation sets out what families of severely affected children and young people need to know.      Click icon for the introduction.      This links to a detailed help sheet.       new

Team around the child has put together a guide in the form of letters to parents and professionals to introduce key experiences faced by many families in this situation and to highlight their needs.      Click icon to browse the guide intended to support families of children with complex needs and the professionals who care for them.        See also background.

Official guidance

Liaise is Lincolnshire’s Special Educational Needs and Disability Information, Advice and Support Service

Click the icon on the left for an introduction to Liaise – an official source SEND information.      It has some brief video introductions.

Click icon on the right to browse a single overall guide.       It touches on the Graduated Approach under the heading Working Together Team – page 27.       For more about this approach see:  Graduated Approach

The UK government sets out what the state offers for Children with SEN.       It is quite brief and easy to follow.      new

SEND local offer

Click the icon to see the Lincolnshire County Council guide to SEN & disability local offer.       It includes Where to start


Ace Education

ACE Education provides independent information for parents on education issues in England.       Click icon for an introduction to Special Educational Needs and related issues.       See also home      parents – for more educational issues

EHC plans

An education health and care plan sets out how children and young people should receive support for their special educational needs (SEN) at school and college.       Click icon for the National Autistic Society’s guide to EHC assessment.       They also have a tab along the top for the plans.

Look it up

Contact offers a range of pages to do with education & learning with SEN.       Click icon to browse.

Parents’ View

The Special needs Jungle is a parent-led resource offering information and informed opinion about children and young people with SEN.

  • See  EHC plans  for example.
  • Their SEND Info menu, at top of screen, offers more detail about Special Educational Needs.        Hover over it to see what is there.
  • Education may be linked to health these days.         See their Health menu.
  • Also, how are the SEN & Disability reforms of 2014 going?       See Education News.


SPELL is a framework for understanding and responding to the needs of children and adults with autism.       It stands for Structure, Positive approaches and expectations, Empathy, Low arousal, Links.      Click icon to find out more.

SEND code of practice

The SEND code of practice lays out the statutory guidance for organisations such as schools who work with children who have Special Educational Needs.        Liase talks about it as the parent’s bible for SEND meetings.       Alternatively, see publication.

  • Chapter 6 – This chapter applies mostly to mainstream schools. (Page 91)       Liase says to print this chapter and use highlighters and a pencil to note each paragraph for use at your SEN meeting at school.
  • Chapter 9 – This chapter covers all the key stages in statutory assessment and planning and preparing the Education, Health and Care (EHC) plan.


Our SEN/EHC Support page has quite a bit of information that could help with troubleshooting.        Click icon to view.


ME/Chronic Fatigue

Here is the NHS guide to Chronic Fatigue (CFS/ME).      Click icon to browse.

It seems to have taken a good few years for ME to become widely recognised across the medical profession as a genuine and debilitating condition but things seem to have improved a fair bit in that respect.      This has been in no small part due to the work of groups like the ME Association.      They are a UK national support group for people with ME.      Click icon for their website.

Dr Charles Shepherd talks about his experience of ME in what is ME?       See also:  symptoms & assessment       what you need to know

Autism and ME/Chronic fatigue

Autistic burnout seems to be an informal phrase used in the autistic community.      Click play button to watch a video by Amythest Schaber.      She seems to have a clear understanding of the issues and presents them well.       Also:

  • They thought I was lazy … when I was just actually autistic.      This is one of many perceptive reflections on life through one female Asperger’s lens.      See article.
  • Is it just me, or do other people with autism feel tired all the time?      See autism & tiredness to view article.

Grantham Children’s Centres

Gradual re-opening

With Covid restrictions easing, children’s centres are gradually welcoming families back.      You may have read about it in County News magazine.       Check out what is on offer, either on the links below or on Facebook.       Hopefully there will be more to choose from in due course.


There are two children’s centres in Grantham, Belton Lane and Swingbridge.      Normally children’s & community centres provide access to services for children with additional needs.      Some centres may have more services for additional needs than others, though.  

  • Lincolnshire County Council website has:  Swingbridge     Belton Lane
  • Lincolnshire family services directory has:  Swingbridge     Belton Lane
  • This website has:  Our base – which is at the Belton Lane centre.
  • If the Belton Lane phone number is given as 01522 550901 it does put you straight through to the Grantham centre – when it is open.

Related Calendar – Time2talk


Lincolnshire Parent Carer Forum, will be holding their next Zoom online meeting for parents of children with additional needs on 23 Aug 2021 from 7-8pm.      John will be hosting it.      Click icon for details.


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.

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:       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.

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


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.


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.


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:         See Speech & language about Makaton.


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.


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 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.

Related Activities …

Table tennis

Have you discovered the free outdoor table tennis in Wyndham Park, Grantham ?       It is next to the tennis courts.      See map to find the park at  NG31 9BA.


These activities and events are not run by GAIN but could be of interest.        See also:  Wider area activities  and  Local groups  for the surrounding area around Grantham.       For holidays in Lincolnshire see Take a break.

Grantham Lynx SwimLynx Swim logo

  • Grantham Lynx Disability Swimming Club.
  • Meets Wednesdays 6.30pm -7.30pm Grantham Meres.
  • New members and volunteers always welcome.

Just turn up at the Meres.      As you go in there will be a table on the right with two ladies and the Lynx swimming sign.      They do not swim in school holidays, that includes half terms. *      Click icon to find them on Facebook or Twitter.      They include some community news from members.

Rainbow Flyers Youth ClubRainbow Flyers Youth Club

This is a special needs club at Ruskington Youth Centre, NG34 9DY, on Sundays 3-5pm.           Ruskington is a village near Sleaford.          Parents can simply turn up with their children.       They would love to see some new faces.       Click image on the left to find out what is what.        See local groups for more information.

Little Jack’s Farm

Little Jack’s Farm is a family run children’s farm on the outskirts of Bottesford.      See map

Grantham Making Noise

At Guildhall Arts Centre      1st and 3rd Saturdays of the month: 12:30 – 14:30          Click icon for more information.       Perhaps a good place to find out what is happening at present would be cotact us.       See also:  article.

The Groove

An exciting, fun-filled night for adults with disabilities aged 16+, their families and support workers.      Guildhall Arts Centre Ballroom, Grantham.       Click icon for the Guildhall contact us page – perhaps a good way to find out what is happening at present.

Grantham College Day Break

For a personalised day opportunity for adults with a learning disability, see:  Brochure         Introduction         Webpage

Lincolnshire Parent Carer Forum (LPCF) Coffee Mornings

This is the new name for Lincolnshire Parent Carer Forum (LPCF).
No need to book.      Meet other parents of children with disabilities and additional needs.          

10.30am – 12 mid-day,   every 2 months at Urban Hotel, Swingbridge Road, Grantham, NG31 7XT,    map.          For dates see website.

Drama groups

Is your child a born performer?

  • The New Youth Theatre has 4 age groups, ranging from 3 – 16 years of age.
  • The Happy Little Drama Club for started on 8 September 2014.        They have 2 age groups ranging from 8 – 13 years of age.

Both groups above are in Grantham.       These are mainstream groups.       See Wider area for a group in Lincoln specifically set up for children with additional needs.        See The Science page under Drama & Performance activities for information about possible benefits.

What’s on

Keep up to date with arts, leisure and culture in South Kesteven.         Click icon for more information.

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



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:                07926 076 790 
  • Luke McCann:     
  • Kate Woodcock:              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