Updates and Surveys

Some of the updates are pdf files.  You can download these free of charge from Adobe by clicking on the icon to the right:        

Scrutiny of Autism

This survey should be completed only by people,  adults and children,  or their carers who receive a service or education in Hertfordshire.   You can access the survey here.    It closes on 19th October.  For more information about what Scrutiny is see our page on this website.


Hertfordshire Autism Strategy

Herts Health and Wellbeing Board are drawing up a Lifelong Autism Strategy for Hertfordshire, to cover ALL services for people with an Autistic Spectrum Condition.

As part of this work, it is vitally important that the views of all stakeholders are heard – Adults and children with an ASC, their carers and their parents.  We,  along with other groups,  have campaigned for years for a cradle to grave strategy with the voices of the people who live daily with autism firmly embedded in that strategy.

Please,  can you take some time to fill out our survey. We would like your views on the Key Principles drawn up that should apply to all services for people with an ASC, and to understand how well those Key Principles are met currently. It is a chance to say how you would like services for people with ASC to be designed and run in the future.

There are three surveys, all the same, but aimed at different groups of stakeholder. Please complete whichever ones you feel best fit your situation.

If you are a person with ASC    – please click here    –   https://www.surveymonkey.com/s/personwithASC

If you have a child with ASC   – please click here      –    https://www.surveymonkey.com/s/IfyouhaveachildwithASC

If you care for an adult with ASC  – please click here   –    https://www.surveymonkey.com/s/careforadultwithasc


Improving Access to Employment Support Services

Only 15% of people with autism are in full time employment despite the fact that 79% of people with autism on out of work benefits want to work.

Can you help improve the access to,  and services provided by Job Centre Plus by taking part in an NAS survey?   More information in this document and you can access the survey here.  Survey closes on 21st March 2014.

Are you the mother of a child with ASD?

Alexandra Reitemeir is a student at Nottingham Trent University and a family member of harc.  She is conducting an on-line survey looking at what factors influence the stress levels of mothers of children with autism?  There are only 10 questions in the survey, so it will take less than 5 minutes to complete.  The survey has been validated by Nottingham Trent University.

To complete the survey, please click on the link here, or cut and paste into your browser:


If you have any questions or comments about the survey, please contact:


Thank you for your time!  

Survey finishes 5th March 2014


NAS Workshop on SEN Code of Practice

The  Government  published  a consultation on the draft Code of Practice  and regulations  for the new SEN system on Friday 4 October.   These set out the detail of the proposed new SEN legal framework contained in the Children and Families Bill currently going through the parliamentary process.

The NAS policy team is convening a workshop with parents across our networks to shape our response to the consultation, the deadline for which is 9 December.    We are proposing to hold this session on Thursday 7 November from 11am-2pm at NAS Head Offices, 391 City Rd, Islington, London EC1V 1NG.   Lunch and travel expenses will be provided.  

We will circulate a more detailed overview of the Code and key areas for discussion in the next week. At this stage we wanted to flag the date of the workshop and invite as you many of you as possible to attend. Your input will be vital in helping us ensure the new SEN system works with rather than  against parents and genuinely enables all children and young people with autism to realise their potential.

If you would like to attend please contact Dan Leighton  at   dan.leighton@nas.org.uk  or  phone 020 7903 3565 .

The current Code of Practice is widely regarded for the clarity and accessibility with which it sets out parents and children’s rights. It is vital that the revised Code retains this clarity and equips parents to navigate a new  and potentially more complex system premised on more integrated service provision.

According to the DfE the main changes from the existing SEN Code of Practice to reflect the new legislation are

  • The Code of Practice (2014) covers the 0-25 age range;
  • There is a clearer focus on the views of children and young people and on their role in decision-making;
  • It includes guidance on the joint planning and commissioning of services to ensure close co-operation between education, health services and social care;
  • For children and young people with more complex needs a co-ordinated assessment process and the new 0-25 Education, Health and Care Plan
  • (EHC plan replace statements and Learning Difficulty Assessments (LDAs);
  • There is new guidance on the support pupils and students should receive in education and training settings;
  • There is a greater focus on support that enables those with SEN to succeed in their education and make a successful transition to adulthood.
  • At this stage we anticipate key areas for discussion will include but not be limited to:
  • Understanding of ASD: are difficulties of those with ASD sufficiently reflected in core areas of Special Educational Need?
  • Asessesments and EHC Plans:  is there sufficient clarity on how EHC Plans are put together, which provision is legally enforceable and how different agencies can be held to account for different parts of the plan?
  • Redress: is there sufficient clarity on processes for resolving disputes and seeking redress, including for those that won’t qualify for EHC Plans
  • Provision for those without EHC Plans: the replacement of school action/ school action plus with a single schools category and  schools accountability for ensuring the necessary provision is made for individuals with SEN
  • The Local Offer: clarity of purpose, what needs to be included and how people use the Local Offer to make provision  more responsive to local needs and aspirations?
  • Transition: how effective is support offered in relation to post 16 provision?
  • A family centered system: Does the Code put in place a genuinely family centred system with sufficient support and involvement of children, young people and parents in decision making.

See below for more information on the consultation process.

Government consultation on:

Draft 0 to 25 special educational needs (SEN) code of practice, draft regulations

The Government are launching a consultation today on SEN Code of Practice.  The consultation ends on 9th December 2013.  It is is essential that the Government gets this piece of legislation right for all families with disabled children so please tell your friends about it.  You can take part in the consultation here

NAS Exclusion Service

The NAS have introduced a new exclusions service that will be useful for parents of school age children.

The School Exclusions Service offers advice and information to parents of children and young people with an autistic spectrum disorder (ASD) on all aspects of school exclusion in England. This includes advice on informal (illegal) exclusions; fixed-period and permanent exclusions; how to challenge your child’s exclusion and what you can do if you are concerned that your child is at risk of exclusion.

In the academic year 2010-11, 2,480 pupils with ASD received one or more fixed period exclusions.  The most common reasons given were ‘Physical assault against a pupil’ (20%), ‘Verbal abuse/threatening behaviour against an adult’ (20%), ‘Physical assault against an adult’ 

(19%) and ‘Persistent disruptive behaviour’ (19%).

However, in some cases behaviour associated with this hidden disability can be confused with disobedience because of a lack of awareness of the condition and a lack of empathy with the individual.  

Sometimes a pupil with ASD, trying to cope with school life can go into meltdown – the bewildering bombardment of instructions and demands; the deluge of sensory stimuli;  the struggle to keep up with the flow of social interaction that comes naturally to those around them – can prove too much and anxiety can build to stress and ultimately to aggression.

Headteachers may feel that exclusion is the only solution in order to maintain the safety and well-being of other pupils. Indeed it may be the case that a mainstream school is not the most appropriate setting for a particular child. However, disruptive behaviour can be an indication of unmet needs and schools have a duty to make reasonable adjustments to policies and practices to ensure that pupils with ASD also feel safe, confident and able to experience success.

 How to use our School Exclusions Service

  •  Call our Autism Helpline on 0808 800 4104 (Monday-Friday, 10am-4pm). The Helpline will take details of your query and arrange a telephone appointment for you with our Exclusions Adviser, who will call you back at the agreed time to discuss your query in detail.
  •  Email your enquiry to Schoolexclusions@nas.org.uk . It would be helpful if you could provide as much detail as possible regarding your enquiry.

We aim to reply within 5 working days. Please note that it may take us longer than this if our Exclusions Advisor is away.



August 2013- Review of Work Capability Assessment (WCA)

This review is now closed

The fourth independent review of the Work Capability Assessment (WCA) is currently underway, being led by Dr Paul Litchfield (who has taken over from Professor Harrington). 

Many people with autism feel the WCA has failed them – that their condition has not been understood, that the process has been stressful and that the outcome has led to them having to appeal.

This year there is an specific opportunity for individuals who have had a WCA, or people who have represented someone that has, for example a parent or carer, to give their views on the WCA process to the independent review. 

The NAS want as many people with autism and their parents/carers to respond to the review as possible! 

They have launched a supporter action that enables people to respond to the review directly online here

Please tell anyone you know who has experienced WCA to take part.  Our voices count so let’s make them heard.

There is a news story explaining more on the website about the WCA Review

The call for evidence for the review is open until 27th August.

July 2013 – Big Benefits Survey

Can you spare a few moments to complete a survey on benefits.   The National Autistic Society is a member of the Disability Benefits Consortium (DBC) and they want to know about the experiences of people who are claiming or trying to claim benefits.  You can find more about the survey here or you can go the survey here.   Thank you all of our views are important. 

July 2013 – Review of the Autism Strategy  –  Update

This survey is now closed

In 2009 the Autism Act became a reality,  the first ever single condition act in the history of Parliament.   The Government have now launched their official consultation for the Autism Strategy Review. So, to have your say directly to the Government about what needs to change, please visit this page.   This is a huge opportunity to tell Government whether Local Authorities are carrying out the Autism Strategy as they should or whether they are paying lip service to ‘Fulfilling and Rewarding Lives’.   Tell them the reality of an adult living with autism in the UK or that of a parent/carer meeting the needs of an adult with autism in the 21st Century. Open until 6 September

 NAS Supporter Wristbands  Click to see more

NAS charity wristbands    

You can purchase these supporter wristbands from the NAS for just £1.66.

May 2013 – Push for Action
NAS Campaign for Services for Adults with Autism

Push Action

Join today and end the wait for services in your area.

Adults with autism are still waiting for the everyday support they need.  Join the National Autistic Society in their campaign for services for adults with autism.  Go to National Autistic Society – Push for Action or push the button!

You may also like to read Tom Madders (Head of Campaigns) blog on attending the harc AGM  Tom’s Blog .

New harc education survey – please fill in!

This survey is now closed

Earlier this year, we held workshops with parents of children with autism – and education emerged as a key concern.

As a result, we have put together an online survey on education in Hertfordshire, aimed at parents/ carers of children and young people with autism.  The questionnaire includes questions to assess demand for a possible Free School, but it also covers much wider ground, to help us broadly analyse the educational experiences and needs of children with autism.

The link to the survey is below. Please do complete by 30th June 2013 and forward it to anyone you know, whether a member or not,  who may be interested in contributing.   The outcome of the survey will be much more meaningful if we can get a good response rate! It provides an excellent opportunity to let decision-makers know what needs to change.

We will use the results of this survey to campaign to improve education for children in Hertfordshire – this will include providing evidence at Hertfordshire County Council’s review of autism (“Scrutiny”) later this year.

Very many thanks for your help – it is much appreciated!

Please follow this link to  the survey: Education Survey

February 2012 – Autism in maturity survey

This survey is now closed

Sorry, its another survey!  Do you have a brother or sister with autism who is over 40 years old? In order to provide information for more mature adults with autism and their siblings, the NAS need to find out how supporting your sibling with autism will impact on your own life.

See the attached instructions for further information and how to access the survey.

Your Views on CAMHS

These meetings have now closed

The Joint Commissioning Team are holding quarterly public meetings as they want to hear your views on the services provided for people with Adult, Child and Adolescent Mental Health, Substance Misuse, Dementia and Learning Disabilities.

Although autism is not mentioned (again), I think it would be useful for people to flag the issues we face at the meetings. Please find more details on the flyer and invitation attached.

A&E Changes

Follow this link for  information regarding the changes to the adult and children’s A&E services at the QEII in Welwyn Garden City

January 2012 – Hertfordshire is a SEND Pathfinder

This survey is now closed

Hertfordshire has been chosen to one of 20 ‘pathfinder’ areas which will be testing some of the proposals in the government’s recent (March 2011) Green Paper setting out how it wants to see services working for children and young people with special educational needs and/or disabilities and their families.

HCC have now added the presentation slides from the SEND Pathfinder Conference to their webpage at this link.

They have also set up an online version of the questionnaire they used at the Conference at this link.

They would like get as many responses as possible: Please forward this on to anyone who be interested, and encourage them to complete the survey – it will only take a few minutes.

HCC hope to be able to announce a full Conference Report soon, along with further details about the working groups and reference groups.

January 2012 – Getting a Good Assessment

Top tips written by Luke Clements – a leading Lawyer in the field – about getting a good assessment. Although it has been written for the Challenging Behaviour Foundation – the knowledge in it can be transferred to other groups including Autism. Please see the attached 19_Ten-top-tips