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Safeguarding children with autism

In this article, Kiranpreet Rehal, Department for Education (DfE) safeguarding project manager at the NAS, writes about the importance of safeguarding children with autism and details the resources that are being produced through the DfE safeguarding project. 

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Safeguarding children with autism

The safeguarding of children with autism is an important but often challenging task. The biggest challenge is recognising when abuse may be occurring in the child’s life. With autism being a spectrum condition, and the differing communicational and sensory needs that some children have, often signs of abuse can be missed or even attributed to behaviours associated with autism.

Research has found that children with disabilities are at higher risk of experiencing abuse and neglect than non-disabled children, but they are less likely to be subject to child protection plans.1  Research from the US has also indicated that there higher prevalent rates amongst children with autism than those without disabilities.2

Children with disabilities are more vulnerable to experiencing abuse and neglect for many reasons including:

• Being more dependent on others to meet personal and intimate care needs.

• Not being aware that what is happening to them is even wrong.

• Communication difficulties that prevent the child from expressing concerns about what is happening to them. 

On the National Autistic Society (NAS) Autism Helpline, there have been calls from parents who are having to undergo child protection procedures because services have felt that the child is suffering from abuse and neglect, when instead it is a matter of the professional not recognising the traits of autism. Signs and symptoms of abuse and neglect, such as being withdrawn, self-harming and avoiding eye contact, can easily be confused with characteristics of autism, and vice versa. Leading to difficulty for some professionals to identify when abuse is or isn’t occurring. 

Children with autism can also abuse other children. This can be through learned behaviour they see at school or on the television, or even because they themselves are a victim of mate crime (befriended by others who behind the pretence of friendship, actually take advantage of them). 

Whenever a child is involved in harming another child, the life of the child who has abused should also be carefully assessed. It could also be that the child themselves is also a victim of abuse.  

Even if there are serious concerns, the child protection process should be carried out in a child centred way, where the needs of the child with autism are met throughout. Occasionally the child’s autism is not fully considered, leading to an already difficult process becoming more stressful and resulting in the child portraying behaviour that appears challenging. This can commonly result when carers are suddenly stopped from having access, there are changes in routines and with the involvement of new people.

Understanding and identifying safeguarding concerns is a very sensitive process and it is important for professionals to fully understand the child’s life by learning as much as they can about them through the family, schools and services that know them best. It is better when decisions and discussions are had with all those who know the child and the child’s views have also been sought through those that can communicate effectively with the child. 

The Safeguarding Project

The Department for Education has funded this unique project about improving safeguarding standards for children with autism by developing cost efficient resources that professionals can access and increase their understanding and awareness of safeguarding children with autism. The NAS led on this project, in partnership with the Autism Education Trust and Ambitious about Autism.

A Safeguarding Children with Autism booklet has recently been published. Written for professionals with limited experience either of child protection, or working with children with autism, this essential guide identifies the key principles of safeguarding and clearly outlines the steps that need to be taken when there are concerns. For a limited time only, this booklet is free to order.

An online Safeguarding Children with Autism training module will also be developed for frontline health, social care and education practitioners who work with and support with children and young people with autism. This module is in its early stages of development and will be available in 2015.

If you are interested in knowing more about safeguarding children with autism, or would like to keep updated with developments of this project, please join the Safeguarding Children with Autism group

It is important to remember that frontline practitioners who have safeguarding concerns about a child should do the following: 

• Recognise behaviour that may indicate abuse or other types of harm. 

• Respond and listen to ascertain the situation. It is important to ask open questions only and not to use leading or probing questions. It is also important not to make any promises about what will happen next. 

• Reassure the child that they have done the right thing by communicating and emphasise that help is on its way. 

• Record precisely what has been alleged and/or what has been observed, using key phrases and words the child has used. 

• Report concerns to the known designated person or their deputy. 

• Where indicated, the designated person should refer to the local authority to be consistent with local safeguarding protocols. 

All professionals who work with children and young people must make sure that safeguarding remains on the agenda at all times.3

 


References

1 Ofsted (2012), Protecting disabled children: thematic inspection. 

2 Mandell, D.S. et al (2005), ‘The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health setting’, Child Abuse & Neglect, Vol 29, pp. 1359–1372

3  Safeguarding Children with Autism, Wade Tidbury, The National Autistic Society 2014

 

Author: Kiranpreet Rehal

 

Date added: 22 October 2014

Comments

AutismAdvocate

Thu, 30/10/2014 - 17:58

What is vital, is that professionals receive adequate autism awareness training.  What is also vital is that the automatic blame culture within many public services is addressed.  Jaded and cynical professionals can all too easily wrongfully attribute differences in autism (as well as other invisible disabilities) to abuse.  Parents need to be respected as experts in their own children, assumptions must not be made, professionals must remember that is innocent until proven guilty, not the other way round.  Whilst parents are being accused, that is putting families under enormous strain, which is detrimental to their children too and is therefore abuse.

It might behove some professionals to read Professor Vivienne Cree's series on moral panics: http://moralpanicseminarseries.wordpress.com/2013/02/08/moral-panics-for-the-21st-century/

What professionals also need to remember, is that once accused, those accusations stay on file.  So even when parents are proven innocent, at any time in the future those files can be picked up by someone else and start the false accusations all over again, using what is already on file as further evidence to back up their claims.  You cannot undo the damage done to entire families by false accusations, it damages the very children who the professionals are supposedly protecting and destroys the parents.  They are causing the very emotional harm they have falsely accused the parents of.  This is also state abuse.

Professionals are human beings too, prone to mental health problems, personality disorders, bias, lies, pride, vengefulness and mistakes.  They are not a different breed of perfect human.  Holding professional opinions as truth and parental opinions as untruths is utterly wrong.  This is also state abuse.

What is also tragic, is that whilst social services are investigating innocent parents, there are real victims such as Baby P, Daniel Pelka and Victoria Climbie suffering and dying.  Not all social workers are in the job for the right reasons.Resources need to be correctly targeted, not misused investigating soft targets such as ASC families.

It is also important to raise the issue of abuse within care homes, foster families and other placements.  I have read of many anecdotal stories of innocent parents having their children removed and during contact sessions the children have unexplained injuries and bruises.  This is also state abuse.

There is a problem with ASC children not being correctly diagnosed and instead being wrongly diagnosed with attachment disorder and removed from birth families and adopted out against the parents' wills.  The adoptive families are sometimes not told of the child's special needs, or are told it is attachment disorder due to abuse and this puts them in a very difficult position dealing with a child who should have been diagnosed with autism or ADHD whose behaviour continues due to their condition being unsupported.  Once a child is adopted, it cannot legally be undone, but there are likely a significant number of cases where it should never have been done.  The trauma to a child of being wrongfully removed from their parents cannot be underestimated.  An ASC child especially feels things deeply and suffers PTSD more readily than a neurotypical child and that decision affects them for life.

Parliament undertook an inquiry on CAMHS (http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/childrens-and-adolescent-mental-health-and-camhs/written/14086.html) and the failings of CAMHS which caused the inquiry to take place, mean that autistic children are being abused by the state in various ways.

Many autistic people also have Ehlers Danlos Syndrome, a connective tissue disorder.  This puts them at risk of accidental injuries which are wrongly interpreted as abuse. http://corticalchauvinism.com/2013/08/12/ehlers-danlos-syndrome-and-autism/

http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full

https://www.ehlers-danlos.org/images/medical_news_and_research/Joint-Hypermobility-and-the-Brain.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/

The NHS is shockingly behind or is ignoring the research that is out there, failing to diagnose people with ASC and EDS, both conditions are hereditary and their children often go undiagnosed too, especially with EDS, and inappropriate state interventions traumatise whole families.  There is a paediatrician bravely helping wrongly accused families of children with ME/CFS (https://www.youtube.com/watch?v=XcRZo1vO53c), which in at least some cases is actually not ME/CFS which it has been misdiagnosed as (http://www.dailymail.co.uk/health/article-2659736/Third-ME-cases-wrongly-diagnosed-Experts-says-thousands-thought-chronic-fatigue-actually-similar-condition-treated.html), but EDS.  This type of steamroller approach by swathes of professionals wrongly and hysterically citing child protection is happening to ASC & EDS families too.  If you added up the true cases of abuse of ASC children by their parents, I would put money on it that it is a drop in the ocean compared to the abuse by professionals in public services of ASC children and their families.  Even in cases of genuine abuse, I would question how many instances of abuse or neglect are due to families being unable to obtain the support and respite they need from the state to cope, reaching the end of their tether, perhaps becoming unwell themselves and losing their rationality.

There is also the issue of the misuse of the Mental Capacity Act for autistic adults.  Medication is also being wrongly used to sedate people with autism so they are compliant, because that is easier than giving them the support they actually need, despite that NHS NICE Guidelines state not to medicate ASC.  The health needs of many autistic people are also being ignored - I have heard of one recent case where an almost adult ASC individual suffered severe faecal impaction from medication that should have never been given and was not reviewed or the side-effects that caused the impaction, investigated.  The behaviour in the autistic individual obviously deteriorated due to intense discomfort/pain and the answer was to increase the medication dosage.  The state is removing children from their parent's care once they become adults so that it controls what is spent and how, I have heard it described as a gravy train.  Instead of providing resources for the individuals to remain with their parents where they wish, parental rights cease and vulnerable autistic adults are forced into situations which are not in their best interests.  The Government is doing nothing to police what is happening in this country.

Defensive public services who don't want to provide resources are also quick to blame parenting rather than recognise what the child needs, because that of course would involve spending.  It is an abuse of a child's rights to fail to diagnose or support.

Your bulletpointed list doesn't offer alternatives that consider any of what I have stated above.  What is also not recognised, is that autistic children can speak in a way that can be entirely misinterpreted, it can come across as meaning something to others which it isn't.  Only someone with true knowledge of autism will be able to understand that, and only a parent will know their own child's nuanced way of speaking.  The fact that social workers wish to see a child alone to question them, means they could completely get the wrong end of the stick about what the child is saying.  Only if the parent is present, and can enlarge on what the child means, would the social worker be more likely to get the correct information, but they would automatically be treating the parent with suspicion or accuse the parent of making excuses or leading the child even if they allowed them to be present.  ASC children also themselves misinterpret much, which also means they could think something was wrong that wasn't and their statement of events would be taken at face value.  It's not only the language that is used, it's how it is constructed and the meaning behind the way it is constructed as well as the child's interpretation of what it is they have said, and their overall world view.  Professionals are rarely looking for alternative explanations, they are quick to jump to conclusions and blame.

I applaud your comments above Kiranpreet as you have recognised some of the problems ASC parents are facing, but don't feel it goes anywhere near far enough.  Something has to change.  The NAS has to stop being so grateful to the Government for funding that it doesn't bite the hand that feeds it and challenge the Government to do something about this entire state of affairs and until it does, massive miscarriages of justice, abuse of human rights and destruction of lives will continue.