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A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

We will support your foundations

23 Aug

I read a terrible, terrifying blog post post yesterday from Kim Stagliano on the Huffington Post. In it she describes how her daughter has suffered abuse at the hands of a support worker. The story is also coverered by the Connecticut Times.

Police said the girl’s parents were trying to figure out how their non-verbal daughter kept getting bruises and sprained fingers on her right hand when on May 19 they received a call from the nurse at Frenchtown Elementary School that their daughter had arrived at school that morning crying hysterically. The parents then demanded to see the video from their daughter’s school bus.

That video, which also had audio, showed Davila grabbing the girl’s hands and the girl then crying out in pain.

Police said they then obtained DVD copies of the bus videos for April 27, April 29 and May 19. On the 27th and the 19th the driver of the bus was Davila’s mother.

Police said the April 27 video shows Davila, during the bus ride from the school to the girl’s home, putting her hands in the area of the girl’s hands. With each movement the girl’s cries get louder, police said.

This is one of my darkest fears. That my non-verbal daughter or my step-daughter, both autistic, should suffer abuse and not have the language skills to communicate their ordeal. Or even if they did have language skills that they were too terrified to speak out.

On this issue we – the whole autism community can easily stand as one. Whats happened to Kim Stagliano’s daughter is beyond appalling. She writes on the HuffPo of shaking the foundations of those who have hurt, or allowed to hurt, her daughter. I fully agree with her statement and as the title of this blog post implies, I will support her foundations in whatever way I can.

LBRB on Facebook

22 Aug

I finally got around to creating a ‘Fan’ page on Facebook for LBRB as an alternative to the Networked Blog. I do understand theres an unofficial page floating around but please consider this the official LBRB page.

Also please take the time to click the ‘like’ box (below on the right) to add to the number of fans LBRB has (currently…erm…1…me)

Communicating Effectively About Vaccines

4 Aug

A new study is looking at how messages regarding vaccines are assimilated by the US public.

Immunization rates continue to be high but concerns about vaccine safety are increasing. Current communication methods do not appear to lead to more comfort with vaccines, making it more important than ever that state and territorial public health agencies, charged with promoting, monitoring and tracking vaccine use, understand the growing reluctance among parents and guardians to fully vaccinate their children and identify effective messages about the benefits of vaccines.

According to this report 5% of all respondents mentioned autism-related concerns and above average amount of people designated the statement:

Vaccines can cause serious health problems like…autism

‘convincing’.

and the conclusion states:

…Current communication methods based on scientific research do not appear to lead to more comfort with vaccines…

Reading this blog post one would tend to think it was a bad report for vaccines. Far from it, its wholly positive, which one will gather if one reads the whole thing. However, the aspect of the report I’m particularly concerned with (autism) shows that there is a growing trend of belief and a shrinking trend of science in what leads a parent to make up their mind. And apparently autism plays a relatively large percentage in that decision making process.

So what do we do about that? The science is clear that vaccines don’t cause autism but the US public seem to be ignoring such science. What else is there available that we can use? Because take note, we in the autism community have an obligation to society as much as they do to us. Their obligation is to do right by autistic people. Our obligation is continue to fight the idea that vaccines cause autism. If we do not then the public will believe that *all* parents of autistic people and autistic people themselves believe that vaccines cause autism – thats a very dangerous place to be.

ACT Now!

27 Jul

UK Autism campaigners are working together to ‘ACT NOW!’ about the proposed benefit cuts and assessments and have launched a petition which we intend to deliver personally to No 10 Downing Street. Please ACT NOW! and sign by accessing: http://actnow01.web.officelive.com/default.aspx

The proposed benefit cuts and the assessments will begin in 2013 for those on the Autistic Spectrum who are in receipt of Disability Living Allowance, Employment Support Allowance and other benefits. In addition the cuts across Local Authorities and Primary Care Trusts could have a catastrophic effect on the Autistic community, a group whose vulnerability already creates high levels of stress and anxiety to those involved.

Those who live with autism 24/7, 365 days each year will be at the core of these cuts and will have to live with whatever ensues as a result of the cuts. We are not opposed to cuts as such and understand that cuts need to be made. However the magnitude of the changes that these cuts will bring about and how they will impact on a community that is already marginalised and discriminated against, must be taken into account.

In 2008 the National Audit Office estimated that autism costs the UK 28.2 billion pounds each year and yet only 18% of Local Authorities who responded to the National Audit Office survey were able to give precise numbers of adults with low functioning autism known to services, with only 12% being able to do so for adults with high functioning autism. Given that thousands of children and adults do not meet the criteria for the provision that is available in their Local Authorities and Primary Care Trusts we would like to know how much of the money being spent is on crisis management.

The cuts to budgets in Local Authorities and Primary Care Trusts are going to make it even harder for children and adults to meet the criteria to access the provision that is available within Authorities and Primary Care Trusts, and we fear that only the minimum that can be supplied to these children and adults will be what is given. We also have grave concerns that there will be no new services that would directly benefit autistic children and adults, commissioned by Local Authorities and Primary Care Trusts.

We are calling for urgent talks with Her Majesty’s Government to ensure that those who live with autism 24/7 are consulted fairly and effectively in every aspect of the decision making process that will ultimately affect our lives.

We would like HMS Government to address and respond to our concerns. We WANT HMS Government to address and respond to our concerns.

Lorene Amet of Autism Treatment Trust discusses her beliefs about autism

6 Jul

Lorene Amet, Principal Scientist at Autism Treatment Trust and I got into a debate at Autism Gadfly blog during which I asked her to discuss her view on vaccination. She expanded these views into a blogpost which she entitled ‘Autism and the Environment’. I was puzzled at first as to why she would name a debate about vaccines such a misleading title but then, look again at the ATT page in which Lorene Amet is listed at ATT. Her heading is described as Dr Lorene Amet and whilst she is no doubt a doctor, it is maybe a little misleading that her biography does not make clear that she isn’t a medical doctor.

Amet’s post is awash with Truthiness. Take this passage for example:

First point I would like to make is that Autism Spectrum Disorders (ASD), regressive autism, Pervasive Developmental Disorder-Not otherwise Specified (PDD-NOS) are conditions that are on the increase starting from about 1988. I believe this is a real increase that is not just related to a greater awareness of the conditions and change of diagnostic criteria. However, there is no clear picture as far as Asperger Syndrome (AS) is concerned. There is no data on prevalence of AS alone, and almost certainly this condition was essentially unnoticed, considered as some sort of quirkiness, even in very recent past. Equally, many adults with AS have remained undiagnosed to this day. It is therefore possible that AS is not on the increase, in any case, the data is not there yet to answer this question accurately. However for the rest of the ASD kids, the increase seems real. I can argue this point using a range of additional arguments, but let’s not get too distracted, even if this is an essential point.

Feels true doesn’t it? Except that ‘on the increase’ is a pretty ambiguous term. ‘On the increase’ suggests that there was a clear, unambiguous starting point where we knew exactly what the prevalence of autism was. The truth is, we don’t. There is no agreement from 1988 on an international level about the prevalence of autism. Even on a county by county level in the UK or State by State level in the US, data diverges wildly if it exists at all. If anyone disagrees with this, I’d love to see concrete figures from 1988. Because only from a concrete starting point can we make concrete estimates about ‘increases’.

Amet also falls into the trap of assumption. Assumption that the only two non-environmental aspects of an ‘increase’ can be a) greater awareness and b) change of criteria. Besides these two, there are issues such as greater attainment (more centres and more experts capable of diagnosing autism), diagnostic substitution and change in public policy towards ASD (amongst others).

So is there an autism epidemic? The absolute truth is that nobody knows. To claim or even infer otherwise is misleading. As Richard Roy Grinker says in Unstrange Minds:

…the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.

Amet then goes on to discuss things other than autism – a lengthy part of her post which, as it doesn’t touch on autism, isn’t important to me or _this_ post.

She then says:

The fourth point I would like to make is that Autism is associated in about 60% of the cases with health issues, digestive system, immune system and commonly presents with a regressive feature (again about 60% of cases). Some preliminary reports can be found discussed in the BMJ. This is important because we are starting to conceive that some people might be more vulnerable than others if they are placed in situations of overload. Overload can be understood quite broadly. Overload in terms of insult to the immune system, overload in terms of specific toxins (e.g. organophosphates), or overload in terms of stress, etc.

This is a very contentious argument which is again more truthiness than true. The 60% figure is unsourced and _seems_ to be numbers gained from a very biased source – ATT caseload. I would warn Amet against the dangers of cherry picking data that seems to support your ideas. Maybe it would be better to find support from the independent science on this issue.

Although this is a post that is supposed to be about vaccines and Amet’s own views on the matter, the only ‘hard’ unequivocal statement on the matter comes here:

In short, yes, in my opinion vaccination is implicated in some cases of autism, my guess estimate is in about 20% of cases of today’s autism, possibly more, but not less. There are other issues that are very important to consider and vaccination almost certainly affects a person in combination with others environmental factors and together with a genetic susceptibility.

No data is presented to support Amet’s guess, or even to support Amets guesstimate of 20%. This is the crux of the matter to me and yet I see nothing of any substance in Amet’s long post to support this belief.

ARC of California action alert–Help Save Lanterman Act Services for People With Disabilities

16 Jun

If you live in California you likely know that the state is under a huge budget crunch. If you are reading this blog you may also know that the state has implemented some drastic changes in the Lanterman Act–the law that set up the regional centers and governs much of how the developmentally disabled are supported.

Here is the action alert from the ARC of California. If you live in California, consider going to that site and sending the email to the legislature. The ARC’s message is below:

Help Save Lanterman Act Services for People With Disabilities

Dear Friends,

I’m asking you to take 45 seconds to make sure that no one is cut off from services funded through a regional center without a chance to participate in the decision.

The Arc’s bill to stop that horrible practice is going to face a hearing and vote soon in the Senate Human Services Committee. Please click on the blue “Take Action” line in the upper right and follow the simple instructions about how to send a pre-written support e-mail.

About 700 people sent these e-mails to the Assembly Human Services Committee in April, which is one reason why our bill passed that committee 5-1 and then the full Assembly 65-7. Can we reach 1,000 this time?

Under the Lanterman Act, everyone with intellectual and other developmental disabilities and their family members is supposed to able to participate in the decisions that affect their own lives through the individual program plan or individual family support plan process.

But, especially in the last year, in hasn’t always worked that way. In the chaos caused by the drastic 2009 budget cuts and the sometimes confusing new laws that the Legislature and Governor Schwarzenegger passed along with the cuts, some regional center staff members have mistakenly simply cut people off.

Assembly Bill 2702, introduced by Assembly Member Wesley Chesbro and sponsored by The Arc, will it make it clear that the Lanterman Act hasn’t changed – it still gives decision-making power to the planning teams, which include the people with intellectual and other developmental disabilities and their parents or other advocates.

Please forward this Action Alert far and wide to anybody you know in California who might be willing to send an email to help our community.

Thank you for your advocacy.

Greg

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

10 Jun

A very broad coalition of disability groups has sent a letter to the secretary of the U.S. Department of Health and Human Sevices, Kathleen Sebelius. Amongst those groups is the Autistic Self Advocacy Network (ASAN). A statement from ASAN in an email announcing this letter is below:

In the United States, people with disabilities often face barriers to obtaining adequate health care, and one of the major difficulties is a lack of adequately trained primary care providers. The Autistic Self Advocacy Network has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website

The letter in full is reproduced here:

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women’s Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV – The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: http://www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

The Thinking Person’s Guide to Autism

7 Jun

There’s a new blog/book project in town and its right here (or @thinkingautism on Twitter or here on Facebook).

The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed.

…

Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families.

There’s a great team of people behind this project and I for one am greatly looking forward to the content they put out.

Mike Stanton Speaks

13 May

The following is taken from a piece from Secondary Education.

A leading expert on autism has said that mainstream schools should re-evaluate how they respond to children with Autistic Spectrum Disorder (ASD).

According to Mike Stanton, a teacher at the George Hastwell School in Cumbria, which caters for children with severe learning difficulties, many schools often treat autism as a behavioural problem rather than a communication problem.

Instead of viewing difficult students’ actions as “challenging behaviour”, he encourages teachers to take a different attitude and consider what lies behind the situation.

By trying to understand why the pupil is reacting in a certain way, Mr Stanton thinks that the problem of strained relationships between teachers and autistic children – sometimes caused when the child is asked to do something they do not want to – could be avoided.

“There’s a thin line between fight and flight in autistic children,” he said.

Mr Stanton told us this “fine balance” can be more sensitively addressed in the classroom by looking at two principal ASD issues: time and space.

Unstructured time and social interaction are difficult for autistic children, he says, but strategies can be implemented to make these easier. For example, providing respite from the hustle and bustle of the school in the form of a quiet room, or structured, quiet activities such as playing chess.

Beth Reid, policy manager for the National Autistic Society, agrees that there are basic things that can be done, such as changing the ways in which autistic children are spoken to.

For example, as people with ASD can often take things literally, teachers can avoid using complicated, metaphorical language. She told us: “We can be more aware of the environment that they are sensitive to.”

However, Mr Stanton feels that beyond the school gates, services and provisions should be put in place to more effectively tackle barriers such as a lack of teacher training, and the examination system.

He said: “Mainstream schools operate under the burden of Ofsted inspections and exams. To change this, schools should be able test competencies, instead of having to implement stressful exams.”

Mr Stanton believes that the government should do more to reward schools that take on less-able children. He continues: “It is wrong that a school which takes children no one wants can be classed as a ‘failing school’.”

Furthermore, Mr Stanton claims that much of the research done into teaching autistic children is not getting through to educational establishments because the researchers themselves are using the wrong tactics.

“Teachers are bombarded by new initiatives and people telling them to change their approach,” he told us. “If the people doing the research could go into schools and find out what they need help with and what they can change, then that might work.”

Despite this, Mr Stanton says that things are gradually changing for the better, referring specifically to the Restorative Practices programme. Although not autism-specific, the programme’s approach has been found to be highly effective. Instead of attributing blame, it focuses on repairing relationships. By asking children questions like “what happened?” and “how did you feel?” a more co-operative response is elicited than if they feel accused.

Training for the programme is currently taking place in special needs schools across the country, and in some mainstream schools. However, a significant lack of awareness still exists about ASD.

Ms Reid continued: “I know of schools that are doing excellent work but I still hear of establishments that don’t think autism exists and perceive it as naughtiness.”

Mr Stanton added: “There is still a huge amount of ignorance surrounding ASD and people often don’t take it seriously.

“There is not enough respite provided for autistic children, and not enough trained staff. Also, those who are trained are overworked.”

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