ABC: Autism Bullying in the Community

ABC: Autism Bullying in the Community

Chris Bonnello, a former teacher with Asperger’s syndrome, was the winner of Anna Kennedy Online charity’s Autism Charity Hero Awards  ‘Online Social Network Award ‘ category in 2018.

Chris runs an extremely popular Facebook page called ‘Autistic Not Weird’ and he has created a wonderful community through all his work. Chris now has over 100k followers on Facebook alone, he also runs two private support groups online and creates a safe, friendly and inclusive place for everyone to find support and make friends.

 

Both Chris and I have been on social media for many years and we both agree that, regrettably there has always been bullying, abuse and even harassment in the wider autism community. The problem is that these highly regrettably trends are now getting worse. There appears to be a huge storm of hatred that has been brewing; it is almost like people are trying to widen the existing divides within the autism community as much as possible.

In the last few days, no fewer than FIVE of Chris’ blogger friends have either quit blogging or are tempted to do so. The one reason they all have in common is that they just don’t want to deal with the toxicity anymore as it is too stressful.

Chris has shared the following with his community group:

‘Parent friends of mine who have blogged about their family’s experiences – including *autistic* parents of autistic kids – are exhausted after not being able to make a post without someone judging/harassing/bullying them. Sometimes that person’s an autistic adult, and sometimes they are just a “better parent” who likes looking down on others. I was planning this post; a hate page was created specifically to bring down a harmless autistic blogger. Separately, another friend had to call the police this week because of online harassment.

I’ve discussed the reasons for abuse and toxicity in the autism community in a couple of my articles, but here’s the short version: too many people have been hurt for too long by too many other people. Nearly everything discussed in the autism community is discussed against a backdrop of hurt, and that hurt can range between family rejection, domestic violence, mental health difficulties, and societal judgement in general. This means the autistic person (or their relative) on the other side of the screen is likely to be more vulnerable than you think. ‘

 

Chris produces articles covering autism – related topics including SATs and exams advice, mental health issues and about growing up autistic. Chris has published a book called ‘What we love most about life’ which features 150 children with an ASD answering the question in the book’s title. The book has been valuable to many children and adults making them feel less alone.

Both Anna and Chris spoke in Manchester last year at ‘Autotrader’ highlighting Autism and Employment.

In recent weeks and months, we have been approached by many of our followers who are parents, carers and autistic adults. They are voicing their concerns and fears of posting messages whether they are personal messages, articles or posts on their social media especially Facebook and Twitter.  We share their concerns. Messages shared with us reveal that many people are being bullied and attacked when posting their personal experiences or articles they may find of interest to themselves or others.

Chris said: “In my opinion unfortunately, people react to negative experiences in different ways. Some people with an ASD react to a lifetime of hurt by campaigning to make sure nobody else must go through what they did. Others just pass the hurt onward by abusing whoever they see on the internet. And some genuinely believe they’re doing the former, while they’re doing the latter.

Likewise, some parents of autistic children react to years of judgement by providing the best guidance possible to other people who are being judged. Others react by admonishing adults with an ASD for being “not like my child”We both don’t know when the internet collectively decided that judgement and being ‘the voice of all reason’ was more effective than outreach, but we both strongly refuse to play this game and would advise others to do the same. That does not mean we do not respect or do not want to hear about the lived experience of people with an ASD.

Chris said “’I’d like to believe I run a community who feels the same way. We run personal and community pages groups and we want it to be a fun and supportive way to raise autism awareness and acceptance.”

Chris told Anna that “when people started pointing out that his group Autistic Not Weird was the ‘only place in the autism community they felt safe’, running his page became a responsibility above all else. And with all this antagonism going on in the wider autism community, I think friendlier places like this have a duty to weather the storm”

Anna then asked Chris ‘What can we do to make sure our pages are the best they can be?

Chris shared a few ideas.

  1. Click here to read the community guidelines his group Autistic Not Weird.
  2. Remember that the number of vulnerable people in the autism community is enormous, so act accordingly and with empathy and compassion.
  3. Remember that different people are in different scenarios, so different issues may need different solutions. And that’s ok.
  4. Finally if you see abuse on Autistic Not Weird or AnnaKennedyonline, please either tag Chris or Anna send us a PM. Tagged comments get seen faster, and PMs get seen in our personal account’s notifications. Don’t rely on us just seeing nasty comments naturally, because we are both less able to see everything these days.

Both Anna’s and Chris’ Facebook Community Pages are those rare pages where everyone is welcome: autistic people, their relatives, professionals, and people with no link to autism who want to learn about it. And if life has dealt you a tough hand, you’re especially welcome. Some of the best people we know claim to be “broken” (in their words) at the same time as going to extraordinary efforts to help and guide those around them. And the most trustworthy people we both know are the ones who aren’t afraid to listen to others’ perspectives.

We would both like to thank everyone who reads this joint article.

Autistic Not Weird‘ and ‘AnnaKennedyonline‘ have been wonderful pages to run, and we have no doubt we can both play an important part in trying to bring the autism community together and to the best of our ability.

Please note : One very important thing to remember is that, if members of our community are constantly seen to be in conflict, this weakens our effectiveness. Indeed, it may only reinforce negative but inaccurate preconceptions about people with an Autism spectrum condition.

By Chris Bonnello and Anna Kennedy OBE

SEND parents of school refusers criminalised instead of supported

SEND parents of school refusers criminalised instead of supported

University researchers have discovered that most of the children of parents who’ve been fined or threatened with a fine over school “truancy”, have SEND or mental health issues. In England and Wales, in 2017, ten parents were jailed for the offence of truancy, for not ensuring their child(ren) are regularly in school. Nine of them were women.

SEND parents reading this will not be at all surprised at the results of this survey, even though it’s only of relatively small size. But researcher, Rona Epstein, of Coventry University’s Law School, says the results show show that that non-attendance at school should be treated as child welfare, and not a criminal justice, issue and she’s written for us about the research.

Prosecuting Parents of Children Who Have Missed School by Rona Epstein, University of Coventry, Coventry Law School,

Try as they will, some parents cannot get their children into school. You cannot force a 14 year-old out of bed, you cannot force a child into school uniform who is refusing. It’s not possible. You can imagine the stress this is causing. We need research on this

The above extract is from a letter written by an educational psychologist working with parents of children and young people, some autistic, many with a range of SEND (Special Educational Needs or Disability). It was the starting point of this research study on the prosecution of parents whose children do not attend school regularly.

In England and Wales, the offence of truancy is deemed to have been committed by parents of school age children who have not attended school regularly, missing 10% of school sessions. The offence is strict liability, which means that the prosecution does not have to prove intent to commit the crime or even that the parent was aware that the child was missing school. The punishment can be a fine up to £2,500 or a term of imprisonment.

Many children who are persistent truants/school refusers are on the autism spectrum, have SEND and are highly anxious, many have been bullied and are frightened of school. Many of the children and young people who do not attend school regularly have moderate or severe mental health problems.

Vulnerable families

Their parents, try as they might, simply cannot get their children in to school.  They are vulnerable families, some of the parents are themselves ill or disabled.  Many have received repeated fines and threats of prison. Many more parents were prosecuted (three out of four of them mothers) than you may think. In 2017 in England and Wales:

  • 16,406 people were prosecuted for truancy, of whom 11,739 (71%) were women. 
  • 12, 698 were convicted, of whom 9,413 (74%) were women.
  • 110 people were given a suspended sentence of imprisonment, 88 (80%) were women.
  • 500 were given a community order – 416 (83%) were women.  Ten people were sent to prison, nine were women. 

It is clear that women are disproportionately pursued for this offence.

Our research set out to get first-hand testimony from parents who have experience of the system. We placed online an anonymous questionnaire asking parents whose children have missed school about their child’s health, whether they had special educational needs or a disability (SEND), whether their child had been bullied, what were the circumstances of the parents and other family members, and whether or not they had been prosecuted or threatened with prosecution.

Questionnaire research

126 parents completed the questionnaire giving information on 132 children.

  • About 40% of the children were reported as on the autism spectrum.
  • Many of them had other health issues. 
  • 90% of the children had SEND or a health problem, and almost all were very anxious.
  • Some 60% of the children had been bullied in school, mostly by other children and some by school staff. 

All 126 parents in our survey reported stress and some family problems. We looked at features indicating families who were facing particular stress and difficulties: single parents, parents who are ill or disabled, those who receive carer’s allowance, indicating very severe disability in the family, having other children who are ill or disabled – 42 parents (33%). They described a number of serious difficulties which indicated that they were under particularly great stress

Bullying was an important part of the experience of many of the children in this survey – 60% of the children had been bullied: mostly by other children, but a significant number by staff. Some of the incidents of bullying described were extremely serious: for example a child punched in the stomach leading to hospital treatment for a damaged bowel. One parent reported that her child was locked in a cupboard in his special school.

Night terrors and extreme fear

The parents described their children as suffering night terrors and having extreme fear reactions when it was time for school. Some described acts of self-harm, and threats of suicide. All the parents had tried, without success, to get their children to go to school regularly. Despite their best efforts many of these parents faced threats of prosecution or had fines imposed. Many were on benefits or low incomes and found it hard to pay fines. 

A better way

Some European countries take a child-welfare rather than a criminal justice approach to the child who does not attend school regularly. In Denmark, for example, there are no criminal prosecutions for parents whose children miss school.

It is evident that the punitive approach leads to harm for parents, children and vulnerable families. It also appears to be ineffective in getting reluctant and fearful children back into the classroom. The current law is cruel and discriminatory and does not achieve its purpose of reducing the number of children who do not attend school regularly.

Our main conclusion and recommendation is therefore that the criminal law should not be applied to parents whose children do not attend school regularly. It should be a civil matter – a child welfare issue.

There are more stats and information in the report than there is room for in this article, please download and read the report here

Source: https://specialneedsjungle.com/send-parents-of-school-refusers-criminalised-instead-of-supported/

Getting Help with EHCPs: Be Careful Out There! – Special Needs Jungle

Getting Help with EHCPs: Be Careful Out There! – Special Needs Jungle

Getting Help with EHCPs: Many parents look for support when getting statutory support for their disabled children. Be Careful Out There!

Just before Christmas, we took a look at some of the latest figures to come out of the Special Educational Needs & Disability Tribunal (SENDIST). Those figures shone light on a system that was starting to audibly creak under pressure. More and more appeals are being lodged, and an increasing number of those appeals go all the way to a hearing. For thousands of families each year, going to Tribunal represents their best shot at securing their children’s educational rights – and 89% of appeals went in favour of parents last year. 

But as the SENDIST system starts to run red-hot, other difficulties are emerging. Some families are finding it difficult to obtain honest and high-quality advocacy to support them with SENDIST appeals – and some are being badly and expensively let down. 

 

What’s going on?

Over the last year, SNJ has come across an increasing number of cases where families have received poor, misleading, or inadequate advice from people supporting them with SENDIST appeals. SEND is a sector that’s long been blessed with high-quality advocates – not only qualified solicitors or barristers, but others too: veteran parents, specialist freelancers, and other volunteers who provide SENDIST appeal expertise at low cost or no cost. 

But demand from families for SENDIST appeal advice has spiralled. At its busiest point in the spring and early summer of last year, there were over 2,000 live SENDIST appeals in the system. In this situation, a small group of volunteer experts simply cannot help everyone. So others appear to be stepping in, with sometimes variable results. 

We’re hearing of more and more cases where families have been let down by people who claim to have the right expertise – but don’t. It’s tempting to conclude that this might just be amateur volunteers over-reaching themselves, but it’s not. Some unregulated advocates appear to be charging eye-watering amounts of money for very poor advice. 

And you’re not automatically fine if you can tap qualified legal support either. Some of the worst SENDIST advice we’ve seen over the last year has come from fully-qualified solicitors – often non-specialist commercial lawyers acting pro bono.

What Should I Look Out For?

There isn’t any need to panic. If you’re a parent considering an appeal to SENDIST, the chances are very high that the outcome will be in your favour. If you have the time, stomach and stamina for it, you might not need any extra support at all. And if you do need help with your appeal, you are still likely to be able to get reliable, high-quality support.

But from what we’ve seen in the last year, we’d advise parents to be thoughtful when reaching out for help with SENDIST appeals. 

We’ve asked a wide range of experts – parents, young people, advocates, supporters, solicitors and barristers – for their advice on getting help with SENDIST appeals, and between them, this is what they had to say:

  • First upthink about whether you can manage this appeal by yourself. There’s no shame in asking for help, but it’s worth asking yourself this question first. The chances are very high that you will be contesting LA decisions that a SENDIST panel will find to be wrong. It is possible to win SENDIST appeals without help – but there’s little doubt that the process is grinding. And in some cases, the situation may be so specialised that you are very likely to need expert help. 
  • Before you pay for anything, take a look at local and national organisations that might be able to help. See what help is on offer, and how far they might be able to help you with an appeal. That includes IPSEA, SOS!SEN, and the local SENDIASS service – if you’re considering SENDIASS, then ask them whether they can deliver the Minimum Standards for their service, which you can find here. Check your eligibility for legal aid too:

If you decide to pay for SENDIST advice, think about the following:

  • Do some research: how long has the advocate been working in the field of SEND? Has the advocate published anything online, via a website, blog, or via social media? Ask for references, and if the advocate isn’t a lawyer, then look at the advocate’s professional background. Word of mouth can be helpful, but don’t rely on a single source if you can help it.
  • Experience & Expertise: What depth of SEND law experience does the advocate or lawyer have, and how does this experience relate to your own appeal? The substance of an individual Tribunal appeal varies from case to case, and if the advocate doesn’t have the required experience for your particular case, it could make matters worse. 

This isn’t just a potential issue with bringing in an inexperienced, have-a-go-hero parent from a Facebook group with one Tribunal under their belt. Even if you’re getting support from a fully-qualified lawyer, you need to find out if they genuinely know their education and SEND law – and whether they’ve got specific experience in what’s being disputed in your SENDIST appeal. Even pro bono Magic Circle lawyers can trip themselves up if they don’t know the field well. 

  • What am I paying for, and what will I be getting? Before you pay anything, make sure you understand any financial arrangements between you and the advocate for your case – not only for any initial help, but also any ongoing support. If it’s an advocate working for a big organisation, clarify who’ll actually be doing the work. Ask the advocate whether they have legal liability insurance, or how they resolve problems if they emerge. Solicitors and barristers are regulated and have professional codes of ethics, but not every advocate is regulated. 
  • Ask around – If you’ve decided to pay for SENDIST support, get quotes from several suppliers. Advocates are usually cheaper than qualified solicitors or barristers, but not always.  
  • Can I work with this person? If you choose to pay an advocate or lawyer for SENDIST support, you’ll be in regular contact with this person for weeks and months. It matters whether you can get on with this person. Think more broadly too about how they communicate. It might be tempting to sign up with someone who clearly enjoys a legal brawl, but that won’t necessarily get you the outcome you need – particularly when you’re the one who’ll be dealing with your LA in the long-term.

Keep your eyes peeled for a structured guide to choosing SENDIST support that’ll be online in the near future – it’s being put together by Samantha Hale from Simpson Millar, Claire Ryan (parent), Josie Ryan (law student), Justine Bailey (parent), Ed Duff from HCB, and barrister Steve Broach –they’ve shared some of their recommendations above. Big thanks also to Daisy Russell from the IASS Network, and several other anonymous contributors – you know who you are…

And over the last year, we’ve heard of more and more cases where families have been let down by people who claim to have the right expertise, but don’t. It’s tempting to conclude that this might just be amateur volunteers over-reaching themselves, but it’s not. Some unregulated advocates appear to be charging eye-watering amounts of money for very poor advice. 

And you’re not automatically fine if you can tap qualified legal support either – some of the worst SENDIST advice we’ve seen over the last year has come from fully-qualified non-specialist solicitors.

Useful links

 

Source: Getting Help with EHCPs: Be Careful Out There! – Special Needs Jungle

SEND Essentials – useful information for sharing

SEND Essentials – useful information for sharing

Please see some useful Fridge Magnets provided and approved to share this vital information by SEND Essentials.

These were created from snippets from their EHCP workshop resources, bits of SEND law and code gifted all together in one place for sharing. 

Click here for more information about SEND Essentials.

You can download each of these by clicking on the images below.

With credit to Lisa Thomas at SEND essentials

Meeting the Social Care Needs of Adults

Meeting the Social Care Needs of Adults

If an adult is to receive a service from a local authority, they must have come to the attention of the local authority and an assessment (called a needs assessment) will need to have taken place and social services will have concluded that they qualify to have their care and support needs met by them.  

To help ensure that the needs assessment takes place, the best thing for the person needing services or someone acting on their behalf if they dont have capacity to write to the Local Authority requesting the needs assessment.

Useful resources which will help provide template letters and useful explanatory background can be found at Irwin Mitchell Solicitors: https://www.irwinmitchell.com/personal/protecting-your-rights/factsheets-and-template-letters

Click here for the sample letter

 

Our Charity response to NHS Development plan

Our Charity response to NHS Development plan

The NHS has produced its new health service prevention measures (a 10 year plan) designed to be pre-emptive i.e. stopping problems happening.

There is a lot to this initiative including providing early intervention for people with autism. In summary autism will become a priority, the objective being to reduce health inequalities i.e. less favourable treatment received by people with an ASD compared to others.

It seems that the NHS will be taking advice from interested parties such as charities.

It has been suggested that part of the strategy should be:

  • Training in ASD at all levels (including GP’s)
  • Early diagnosis and follow up support

The details have not been decided and clearly, we have seen initiatives like this before. That said, this is a clear recognition that outcomes for people with an ASD are less favourable and it is, for now at least, an attempt to do something about rectifying this.

Anna Kennedy OBE 

Director