Written evidence submitted by Newbold Hope (ADL0002)

Learning from families about the issues around restraint and seclusion – February 2021

Responses to questions asked in The SEND VCB Project – Support Group for Families. This is a private Facebook Page for families of children aged mostly between 3 and 18 who have special education needs and disabilities, and who also present with violent and challenging behaviour. The group is run by Yvonne Newbold and has nearly 7,500 UK parents as members. Since founding the SEND VCB Project, several hundred families have been supported to successfully reduce their SEND child’s violent episodes to negligible and manageable levels, and in many cases, families have eliminated violence altogether. This means that this group of children are much happier, and they and their families have a much better quality of life now. Best of all, they now have a much more hopeful future to look forward to.

In over 100 responses to six questions, parents tell us in their own words how unsupported and marginalised their families are by the lack of service provision and lack of understanding by front-line professional staff to respond appropriately to the unmet needs of children who are physically violent towards other people and who also have a learning disability or autism, or both.

Their answers make difficult, but essential, reading. Certain themes emerge, repeated over and again as you read through the first-hand experiences of families.

Some of these themes are –

The long-term harm done to children’s mental health by being forcibly restrained – some harrowing and heart-breaking accounts of how the effects of restraint can cause lasting harm such as PTSD, flashbacks, fearfulness, lack of trust, low self-esteem, and self-harm, and how these effects can last for many years, possibly forever.

Parental blame – this was such a recurrent theme that was mentioned in a very large number of comments. With no training and support in being able to understand the underlying causes of dangerous and difficult behaviour in children who also have additional needs, there seems to be a culture of blame that has developed, whereby default, behaviour issues are assumed to be caused by poor parenting skills. This group of children have diagnosed conditioned that are known to increase the likelihood of developing anxiety as a co-morbid condition. It is this anxiety which is causing extreme behaviour issues, it is not a parenting issue. However, the immense damage done to families when parents are wrongly blamed cannot be underestimated. This group of children are already being badly let down by services; their only hope of being supported to move beyond their difficult behaviours is that their parents develop the different parenting strategies needed to make a real and sustained difference. This group of parents are already dealing with situations that most of the population simply could not imagine, and they have also very often had to develop some very advanced and sophisticated parenting skills in the process. To vilify and belittle them helps nobody, least of all the children. A parent is also the very best resource that a child will get, and they are often the last hope of rescuing a child from their own behaviour. This group of parents need support, encouragement, and kindness, and to be helped to believe in themselves and their own tenacity to keep going and to make things work better for their child. Instead, the very services who are tasked with supporting vulnerable families, the same services who are failing these children and their families, are making already intolerable situations even more difficult by undermining the child’s parent and diminishing their self-esteem and self-confidence in the process. Parent blame must stop.

The poor provision of services – again and again, reading through the comments there is a real sense of how parents are fobbed off, pushed from pillar to post, with nobody taking responsibility to support the child and their family. It is like reading a catalogue of missed opportunities.

Lack of CAMHS provision for autistic children – it is genuinely concerning to read from many of these responses how common it is for local CAMHS provision to refuse to provide mental health treatments for children simply because they are autistic. If CAMHS is not commissioned to treat autistic children, this particularly vulnerable group of children need specialist alternative provision instead and this does not seem to exist.

School staff escalating dangerous and difficult behaviour situations – there is a real sense coming through from several comments that schools treat children as if they are being deliberately naughty or disobedient instead of understanding that these behaviours are anxiety-led and that children need support to feel safe. A punitive approach is highly unlikely to work with this cohort of children who need a much more therapeutic environment. It is interesting to note that some parents reported that the pandemic has seen improvements in their child’s behaviours simply because they are no longer attending school. However, it was also concerning to read about the confrontational approach that several schools are reported as taking too.

How the child’s voice and their own perspective seems to be completely missing from decisions being made by staff working across schools, healthcare, and social work – what comes across isn’t just that the child’s voice is being silenced, but that in many cases, the child and their parents may understandably feel that they are being bullied by the adults in authority who are working with them.

The children being discussed in these comments below are among some of the most vulnerable in the country. Unless someone steps in now to help them to address their difficult behaviour patterns, many of these children will be on a trajectory which will lead directly to the criminal justice system or to a long-term psychiatric admission by their late teens or early twenties.

These are the six questions that this group of parents were asked, and parents chose which questions they responded to.

1. Has your child even been restrained or held in seclusion - if so, please explain what effects, if any, it has had on your child, on you, and on the wider family? 2. Have you ever asked for support or help? If so, what happened? 3. What have your experiences been with early help? 4. How has the pandemic impacted on your child's well-being? 5. Has behaviour worsened over the pandemic? 6. Anything else that might be useful? Has your child even been restrained or held in seclusion - if so please explain what effects, if any, it has had on your child, on you, and on the wider family?

1. 17-year-old daughter My autistic daughter's mental health deteriorated age 14 which led to multiple suicide attempts and subsequent mental health detentions. Over the last 3 years she has spent the best part of 12 months in hospital and the impact of it has been devastating. It led to almost daily meltdowns and she has been restrained many, many, many times generally because there was a significant lack of autism awareness and her needs were not being met. As I say, the impact of that has been devastating. She has PTSD, and for the last 3 months has been suffering from intense flashbacks which has led her to head bang every single day for the last 3 months in an attempt to stop them. During these flashbacks, she headbangs for on average 30 minutes a day. Nobody can get near her then as she feels she is back in hospital and we have to wait until the flashback subsides. It’s absolutely terrifying. We know she is in all likelihood now going to end up with significant brain damage at some point, and we waken every day hoping that she is still alive. All because the people we trusted to look after her and give her the help that she needed, could not meet her needs. Things really need to change. 2. 7-year-old son. My son has been restrained a few times. I have never given permission for this! I have not been informed by school either! I know because he told me, and I forced their hand by doing a SAR! He now masks constantly within school as he is afraid to be himself! He has also tried suicide due to external pressures of not being supported. He is only 7 years old! 3. 15-year-old son My son was restrained and placed in a locked blue room - windowless and without water. Work was pushed under the door. An iPad timer was placed outside the door and if he made a noise it was restarted for another 15 minutes in seclusion. There was no paperwork to say what the triggers were and no follow up. It was by accident that I found out and requested how many times this was happening. On many occasions it was change if routine at the last minute or because he wouldn’t work alone in the corridor as he was more able than the others. Once was for throwing a foam rocket and once fleas fired an incident the previous day where he touched the radio on the minibus home. The result? He is being treated for PTSD 2 years on. The school said they couldn’t meet his needs if I didn’t agree to their barbaric system. I took the school to an SEN tribunal for disability discrimination. The Judge ordered a full apology in writing to myself and to my son. 4. Eleven-year-old son Our son was restrained at the age of 8 in front of me by a member of staff at school. I ran towards the lady who rugby tackled him to the ground - and I asked her to let him go, repeatedly - I was tempted to film it on my phone but knew for my son that would not be good for him. She said she would not let go until he stopped fighting her. Our child is highly anxious and introverted and has not been touched like that by anyone let alone a stranger -when she let him go, he collapsed into my arms. For many months after that he kept hearing and seeing things, he could not have a bath, he couldn’t go out the house, he kept a blanket in his head all the time. I thought something went off in his brain when he was under that stress and I worried he was brain damaged. Our local Clinical psychologist said she thought he had experienced a psychosis, a known autism specialist doctor described it at having his senses shattered. We lost about a year of life as we knew it and worked on low demand recovery and eventually on to EMDR therapy because when we went near the school (his younger brother attends) his legs would buckle. The whole thing had a dramatic negative affect on the whole family, and we had to change the way we functioned. We went on to complain and face the school governors, many lies were told, and it was covered up, we really wanted accountability, for our son to have an apology and for the school to learn and find better ways to work with autistic children. The school’s complaints process was also delayed causing further harm then we went into the lockdown - whether we end up moving his younger brother out we don’t know - but it seems unfair, we live in a small, contained area/neighbourhood. This individual did leave the school despite the cover up and now the complaints process is over we will we still tackle the L.A about it. The aftermath of the restraint was the scariest things l have encountered worrying he was permanently brain damaged and it cost me for some time my relationship with my son - I was his safe person and then, because of this incident, I wasn’t anymore. He did not trust me or the world. He slept on the floor next to my bed talking all night about the noises he could hear. He was violent and started to bite and kick, there is so much more I could say. He was unable to attend school for two years, and with lockdown now it will be at least three years education that he will have lost. 5. Eight-year-old son My child who has Autism, ADHD pervasive anxiety and emotional dysregulation was shut in a padded cell at his special school and held in prone restraint for 20minutes to the point he was sweating profusely. This school traumatised my son and used restraint and seclusion and not as a last resort. I didn't even know this cell existed until my son came home terrified from school and broke down telling me how this above had happened. On hearing this I went straight to the school and insisted on seeing this room. I was nearly sick when they showed me it wasn't fit for a dog let alone a child, there was even dried up sandwich crusts at the back, there was damage around the foot where you could see children had been trying to escape out if there, paint flaked on the floor from door frame. It really knocked me sick. I said don't you ever put my son in here again, they said what do you want us to do when these kids attack us. I reminded them that all behaviour is a communication and the children that attended the school had SEND so they needed the right help and support not bring locked in a cell or being restrained. My son also does not like touch due to his Autism so you can imagine how much distress this has caused. They ended up excluding my son and I fought the school for two years for disability discrimination the tribunal found that they were responsible under the equality Act 2010 for failing to make reasonable adjustments for Pathological Demand Avoidance sub type of Autism, the padded cell got decommissioned and the school is now set to close down. My son still lives this trauma today and finds it hard to trust anyone at all including me as I put my trust in these vile abusive so-called professionals at his school who have done nothing but traumatise him to the point, his current school placement us now also breaking down too as too much damage has been done. They have ruined his education and caused irreparable damage to my son and my whole family unit. There is no accountability for what these people have done. It’s not fair and sadly this is not an isolated incident. 6. 9-year-old son My son was restrained this week and excluded from school for a day. He is 9, has a diagnosis of autism, and an EHCP at a mainstream primary school. He was made to do some ‘emotional coaching’ work on anger and watch a film he did not want to. He tried to break out of the room and kicked his SENCO in the process. He told me she grabbed him, held him, and pushed him into a wall. He repeatedly kicked her. I asked him if she could have been doing a “safe hold”. He said, “It wasn’t safe, it hurt”. Which was heart breaking. I know the worst thing that you can do when he is upset and angry is touch him, and I have repeatedly said this to school (he was restrained several times last year). As a result of his sensory issues, any touch when he is heightened feels more extreme to him. I also know trying to get him to talk about his feelings is extremely difficult for him and likely to result in an emotional/behavioural outburst. He now hates his SENCO and does not want to go to school, and it is difficult to get him in even on a good day. I feel unable to protect him and my trust in school is diminished, and I am considering if I need to try to get him into an SEN school. 7. 6-year-old daughter I have not any experience of early help but when my daughter first came home six months in with aggression etc from my daughter rife I confided in a children’s centre and asked the GP to investigate sensory processing. Two professionals saw my daughter hurting me and we were referred to CAMHS as an urgent case and thanks to an under-five’s worker, whose specialist area happened to be adopted children with trauma and neurodiverse challenges we got good help. I am one of only two families I know who have had a good experience of CAMHS however so know this story is not typical. My experience of social services was horrific, and I had to take them to court. I won that case which was in relation to them not handing over information on my child and not providing support for her when obviously desperately needed. 8. 16-year-old son Due to extreme behaviours last October, I found myself in hospital with my 16-year-old son. His behaviours were so bad it took 8 security guards to restrain my son. 8 security guards thinking my son was a beanbag for them to jump on. 8 security that held him down and told him to stop fighting them so they could put a line in him and administer diazepam. But as soon as they let go of him, he yanked that line out. 8 security guards and my son still cries about it 4 months later. 8 security guards that have absolutely no understanding of autism. Along with a full ward of medical staff that have no training on extreme cases. 6 day and nights that I could not leave his side, because the staff could not cope with my sons’ needs. There is such a lack of training and understanding on learning disabilities. The whole experience broke him and me.... 9. 7-year-old daughter Yes, I have personally seen my daughter being restrained with her, now previous mainstream school. I appreciate staff safety is important but also realising that restraint can trigger situations to get worse for a child. I felt restraint sometimes is used to quickly as a resolution. If more experienced staff in disabilities was available then better solutions could be used more effectively first, such as, change if environment & sensory equipment. Situations like this do have a negative impact on life at home. After all, that negative experience in & frustration has to go somewhere. 9 times out of 10 it is released at home, in the child's environment where they feel safe. 10. 6-year-old son Not that we know of, but he has said that teachers had “dragged him”. I have no proof. He was however regularly isolated and segregated from his class, playing with, or seeing the other littles was made a reward for good behaviour. This triggered explosive violence from him in school. 11. 12-year-old son The professionals frown upon any parent who has hit crisis and feels they have to restrain their own child. They get judged. Where, they actually want support in managing the very challenging behaviour. They do not want to be holding onto an out-of- control child / adult as much as the out-of-control child or adult does not want to be held. Needs much more kind and caring approach for the parents / carers of the child with difficult behaviours. 12. 16-year-old daughter My daughter has had one experience of a locked hospital and has been in a general hospital on multiple occasions during a mental health crisis This is via the emergency department. During those times I have witness some really horrifying restraints. During admittance to a general hospital, she has spent time on a section 2 on more than one, occasion. I have been in conversation with the hospital over these restrains. These restraints have on occasions resulted in physical trauma as well as adding more mental health trauma. I have seen my daughter pinned down by huge 6ft security guards, I have heard them threaten my daughter with leg straps, even when she isn't able to move because is pinned face down. I have heard them say to her to she is to stop fighting the restraints, they have spoken to her in a manner that only escalates, bearing in mind my daughter has Autism and a chromosome disorder and is not able to do this whilst in crisis. They have gone in and literally shoved her legs away from a door to be able to shut the door. They have been too heavy handed. They have dragged her by her arms. Restraint has mostly ended with her being given an Intramuscular sedation. Security only escalates my daughter’s behaviour. I have heard them speak to her in a threatening manner, on one occasion a security guard told her " she doesn't know who she is speaking too." Time and time again I have told them that you are just enhancing her behaviour with how you speak to her. There has been so much that has been in appropriate and harmful that the trauma my daughter has experienced now impacts her mental health, even the sight of a security guard now can cause huge distress. The hospital where this has happened is listening and steps are being taken to ensure that this won't happen to my daughter again, they are now giving the security added training. The hospital has taken all of this very seriously. This maybe a little too late for my beautiful daughter, but for future admissions it will hopefully make a difference. In General hospitals security only have the basic training and are often employed from outside agencies. With the increase of young people being admitted to emergency department this needs to change. Our children need to be treated with dignity and we as parents need to be listened to. We do not live in a draconian society. This is not acceptable and is a crime against our beautiful children. 13. 9-year-old son his last school secluded him.... his current school does not do this; they look to support and understand rather than punitive punishment. 14. 2 autistic sons aged 13 and 16 Yes repeated restraint by 4 adults at a time between the age of 6-8 and then placed in “internal exclusion “, in a tiny room for the day. My son still 10 years on has trauma from this - the teacher would try and force him to comply where he was literally unable to because of his pda/asd (teacher admitted she was trying to break him!!!) he would run and when they stopped him, he would become violent and then 4 members of staff would restrain him. It led to extreme violence in school and at home when I tried to get him into school. Social services were sent to assess home life (as professionals were convinced the issue must be at home). It left my middle son traumatised too, due to him witnessing his brother’s behaviour. I was broken by the accusations by professionals and the whole child protection procedure even though social services concluded that I was doing nothing wrong. 15. 11-year-old son My autistic son was restrained multiple times at primary school in year 5 and 6. He is now 11 and has PTSD and cannot attend school as a result. 16. 20-year-old son He has never been restrained, but I have locked him in his bedroom when I feared for my safety and the rest of the family. I have also locked myself in my bedroom while he broke down the door while trying to attack me. 17. Eleven-year-old son My son has not been in school since March 2020. He is suffering severe trauma from restraints. Up to 15 in a week. At times 5 adults restraining him. This was in a Specialist school. My son is autistic with demand avoidant traits. There was no need to restrain him in any other place - home, football etc. He was also put into seclusion. He is so traumatised that whenever I try to do work with him, he relives the holds and has terrible night terrors every night. He really was unable to explain what was happening in school. They blamed it on hormones! But I have a much healthier child now. His self-esteem and mental health is better. But he misses being around kids his age. I have taught him solely since March with Jo help apart from a very recent 2 weeks of an alternative provision.NO ONE IS CALMED DOWN IN RESTRAINT LET ALONE A CHILD WHO HATES TOUCH. For us as a family we were experiencing 6-hour long melt downs at home with no idea why. It needs to be banned in our schools. 18. 9-year-old son Yes. Restraint has been used which resulted in bruising. This led to an inability to attend school. Lack of trust. Fear of being away from parent. Extreme meltdowns. Trauma!

Have you ever asked for support or help? If so, what happened? 19. 12-year-old son I asked for support with my son. I was blamed for all the problems, he was taken and placed with his father, my abusive ex, and barriers placed on our contact. They want me to confess, I.e., admit they are right, before I'll be allowed to see my son unsupervised. Lockdown has meant I cannot hug or hold his hand. I have autism, he has an atypical autistic profile in the view of the court psychologist. We struggle with language sometimes so hugging *was* our language. I will never trust social services again. 20. 15-year-old daughter Asked for help with my then 15yr old asd girl. She was violent and running away due to education related anxiety. They blamed parenting and stuck our entire family on child protection and proceeded to bully us and traumatise us for a year before closing the case altogether despite no actions or changes ever having been requested or made. She, nor we, ever got any help. 21. 9-year-old son there is no support. What we have is a therapeutic desert. GP did not believe us, in fact school despite being a specialist school didn’t take us seriously. All everybody does is pointing a blame fingers at the parents. We have had to put him outside during a violent outburst to avoid any body getting injured, which triggered a police intervention and social services. Even after that the support service were moving his case from one to the other. Each service saying they couldn’t support. He is better now after 7 months continuous months of OT and sensory diet all privately funded. The ability of a child to access life changing support should not depend on the bank account of their parents. Sadly, that is what is happening. I do not know where my son would be / where we would be as a family without that OT weekly intervention. 22. 8-year-old son Yes. Got absolutely nowhere. No service will help us. Once went to GP & instead of helping or supporting, they reported to social services - absolute nightmare. I don’t know what we are supposed to do to get any help! Tried school - tried CADS everything. CAMHS would not help as said he won’t engage. Total gap for families like ours. 23. 9-year-old son I asked school for help after working with super professionals at children’s centre, when I was told school need to refer my son to CAHMS. Within two weeks of asking the headteacher for help, I had an aggressive phone call from the head telling me that I needed to get myself sorted out, to get myself to the doctor and basically get myself medicated. She blamed me entirely for my son’s behaviour and would not even consider that he may be autistic. It took months, three lots of social care and finally two ambulances and a stay in hospital and evidence from the emergency psychologist in the hospital before we got the official autism diagnosis and the help we needed to help our little boy. 24. 10-year-old son Last January my son tried to kill himself. He developed extremely erratic behaviour and he told us there were voices in his head calling him names. I took him to A & E hoping that CAMHS would help him - he is undiagnosed but almost certainly autistic. He has high anxiety, he self-harms, he is physically violent and aggressive towards me and his 8-year-old brother. He cannot control his emotions or self-regulate. He also has sensory issues and some Tics. CAMHS refused to see him 7 times as they say its environmental because he witnessed domestic violence at 1 years old. The nurses, the A & E CAMHS Specialist and a social worker all saw his behaviour. Camhs refused to see him again and him and his 3 younger brothers and unborn sister were instead placed on child protection. He was assigned what I can only describe as the worst social worker ever. There were so many issues and she only ever heard what she wanted to hear. She was completely inept. I put in complaints and requested a new social worker, but I was refused. Anyways the only thing we could do was let him live with his dad to safeguard all of them especially as I had a baby in June. We have exhausted all resources available and done every course but not had any help, just a difficult situation made even worse. 25. 7-year-old daughter. My daughter has extremely complex needs and presents often with extremely violent and challenging behaviour. I have my own health issues which mean I can no longer lift her, and the extended periods of sleep deprivation make me extremely unwell. I am a single parent. My daughter is 7. I have begged for help since she was 2 years old. I have been told by a social worker that I was "welcome to have a nervous breakdown" before they would help me. The same social worker committed perjury in family court. I have been told my ex-husband is my "respite" and the local authority will never provide formal respite services. I have begged for an in-home carer, I have been told "you don't need any more help than any other family" whilst I'm now pretty much solely dependent on medication to function and the hours my daughter is at school to sleep. I do not know what to do anymore. I have been told my only option is to take the local authority to court. I am exhausted, in every sense. I have gone above and beyond for my daughter but apparently, I am just a disposable resource to be thrown away once I'm used up and my daughter will be handed off to my crazy ex-husband once the system breaks me. 26. 7-year-old son My young child, diagnosed ASD, ADD, SPD reached crisis point. He grabbed a large knife and wanted to kill himself and me so he could escape the feelings of anger and hopelessness. He said if we both died, he would be with me but not be a bad child. I have never felt so sad and frightened in my life as I did right then. I self-referred my child to CAHMS as I did not know who else could help him and they are the child mental health experts.... Except if your child is autistic... And they believe that the mental health issue is as a result of their autism (which of course they can magically tell via a telephone call) because they "aren't commissioned to support autistic children". So, in future call the police if it happens again and, in the meantime, have your child listen to a meditation app on your phone!!! That was the genuine advice from CAHMS in response to a child in severe mental distress... Words fail me. This is the effect the pandemic has on my child. This is the support I received from the supposed child mental health experts. Is it sufficient? No. Is it fit for purpose? No. Was it if any assistance whatsoever? No. Do I feel supported to care for my child in times of crisis? No. Do I feel like we have been discarded and left to fend for ourselves? Yes! 27. 7-year-old son Asked for help for my son (before ASD diagnosis) and was told by a professional that ‘perhaps it’s not autism like you are thinking. I think it’s attachment issues as you are same sex parents’ 28. 6-year-old daughter I have been raising my worries about my daughter not coping and needing help since before the pandemic started with school. She had nurturing teachers and was in reception when the pandemic started so it seems as though she was able to mask a lot of distress and some of her avoidance behaviours like walking around were missed. I have been treated like a problem parent and an over- anxious parent throughout and been lied to and accused of lying. My making a SAR request and a formal complaint changed that when it was clear from the information provided in the SAR that the accusations made by the school that they had not been told about her special needs were just that. Total lies. She is so behind they can no longer lie about that either and we are in the midst of assessment for EHCP. Had I not forced the school’s hand we would be nowhere. 29. 12-year-old son Yes, we have we asked for respite when things were bad, and we were worried about our daughter getting attacked. Social services gave use money to take him out we have begged for mental health support and got nothing even when he tried taking his own life. Sadly, my background is mental health and I'm a social work student. So, authorities always say I am more qualified to deal with him than others. This is not a patient it’s my son. 30. 16-year-old son Always, as he is adopted. It has always been a battle. We cannot get enough recruit enough carers, so even though we get Direct Payments to fund them, the money just sits in our bank account until it’s claimed back by the Local Authority, and we repay thousands of pounds every year. 31. 7-year-old daughter Yes. Have requested help in regard to doing Covid tests on her, as she has fully refused. Resulting in big meltdowns & aggression. That is with the use of visual aids. Also requested help in regard to basic services i.e., paediatric help. But every appointment gets constantly delayed or cancelled. 32. 11-year old son - diagnosed ASC, dyslexia. Poss. ADHD with PDA profile. School refused consistently to acknowledge anything for over 4 years. We tried to access Camhs via GP referral, they refused to see him. We tried to access CDC via GP referral, they refused to see him. Eventually after 3 years of trying to get help a paediatrician referred him to a CDC colleague and he started the pathway for ASC and was diagnosed a year or so later. In the meantime, we asked school directly to apply for an EHCNA and they directly refused. We did a parental request for EHCNA which was refused by LA, we appealed, and the LA conceded just before the tribunal date. The assessment was inadequate and the EHCP was vague and poorly written and named a mainstream school which we knew he would not cope with. We appealed to SENDIST and obtained further independent reports for EP, OT and SALT. The LA finally conceded a month before tribunal date and named a specialist provision school. We are looking forward to him starting in April. We feel we have achieved the right provision finally but at the cost of much heartache, many wasted years of poor education and many thousands of £s in costs or us to procure assessments that the LA should have commissioned. It seems there is a systemic lack of knowledge and awareness throughout the LA, from schools, through SENAT. There also seems to be a policy and culture to do the minimum, provide the minimum and only scale up provision when it looks like they will be humiliated at Tribunal. They keep doing this and they keep getting away with this. We have also procured individual therapy through Aspens. It is expensive and there is a long waiting list but appears to be good quality. 33. 6-year-old son There is no help... all you can do is scream and shout that you need help. My MP offered to weigh in, but I was not about to be forced to the top of a list that other families have patiently waited for support on! We have had help from SENDIAS and the local authority to help find a setting to help him back into school. If it fails him too, then we will lose our home as I would have to stop working. 34. 16-year-old son Before the pandemic we had a support package which has gradually dwindled to nothing over the course of the pandemic. When I have asked for help there has been very little offered and lots and lots of excuses why there is no help in fact quite often when we do get a call (hardly ever) I don’t really get to say anything, just listen to why they can’t provide such an such a service at the moment. I kind of given up asking because there no point and just makes me feel so drained asking. 35. 11-year-old son When my son was out of school for a year, we did ask for help. He had a caf but were told there was not much they could do as he wasn’t in school. Our GP was very sympathetic, and we were referred to an agency who dismissed us because my son has autism rather than mental health issues. 36. 9-year-old son Yes 1st lockdown I contacted school at end of May as could not carry on with the very extreme violent behaviour... they made provision for him to return to school. 37. 7-year-old son Asked for support often. We received very limited help. No professional has worked directly with my child, no proper assessments were don’t for his ehcp meaning provision and needs are very vague, social worker thinks we should be doing XYZ but it has a negative impact on our family due to her not understanding his issues/disabilities! 38. 2 autistic sons aged 13 and 16There is no support - spent years begging CAMHS for support for one son diagnosed with medical trauma and both have school trauma. A Camhs Psychiatrist attended endless meetings and said he was not commissioned to work with children with autism. Repeated referrals to child protection social care by CAMHS (basically every time they turned my boys down for support) saying SS have resources to support you. Social services always had no concerns and discharged but left me frightened to push for any further support from nhs/Social care, so I focused on getting a good school for both. 39. 15-year-old daughter after being given a four-day school place in a much smaller group/bubble of 6 children with 3 staff. 3. We had to ring the police when she went missing on the advice of the local cluster/early help team. However, they would not class her as vulnerable due to her age and refused to look for her. Instead, they spent their time writing up a DASH report based on her behaviour which is now on her file. I was told that this was to cover their backs after a previous incident where a boy had killed his parent. 40. 20-year-old son We have never had much support at all. I was told by my GP to stop bothering them as there was nothing I could do. I was told by the police that the only way to get help was to place charges against him and that would trigger services. I was not prepared to do this to an 18-year-old at that time, which would have far lasting effects as there would be a record and he would have to declare it with EVERY job application. 41. 9-year-old son First asked for help with possible autism in 2017, CAMHS dismissed us as he was home educated and so I did not have a teacher's evidence to include. Moved to new area and asked new GP for referral in early 2020. This eventually happened after a similar fobbing off about the education authority needing to be involved in the referral. We went back and forth, this time I had information from the National Autistic Society about the exact legislation and that it was a clinical issue and nothing to do with the education authority, I had to stand firm before he even got accepted by CAMHS for initial screening. Fast forward to last week, CAMHS nursing DISCHARGED him! After self-harm, suicide attempts, violent behaviour towards me, inability to attend school or even go out. They gave me inappropriate information regarding his anxiety, they told me that to make accommodations for his autism was enabling! Not once have they given any actual help regarding his mental health or trauma (school trauma, domestic violence). This Monday he had another meltdown, I called the CAMHS number and left a sample of him saying he wanted to die on their answerphone. They called me back, made some remarks about his environment and referred him to social services. During Monday's meltdown he once again wanted to die. I have been hiding the knives for a long time, so this time he wanted to drink bleach, I had to wrestle the bottle out of his hands as he'd managed to get the lid off. This week's meltdowns have been triggered by his tutor deciding she can't teach him anymore; he feels extremely rejected. In conclusion, I have been dismissed, disbelieved, my statements ignored, my son's experiences minimised, been given harmful advice at best. The last time I spoke to them I felt there was blame being put on me by them saying his environment was in question and they were more concerned with schooling than his mental health. 42. 9-year-old son Asked for help from GP. Got referred to cahms who sent me on a parenting course. ASD and extreme anxiety are not caused by poor parenting.

What have your experiences been with early help? 43. 20-year-old son We were unable at access any early help. We were told we were bad parents. 44. Six-year-old son Early help is non-existent or counterproductive when it is easier just to blame the mum. For being a lone parent, being anxious, having had social services involvement for some reason and so on. I feel it would be beneficial to assess all children whose parent seek help for sleep issues, crying, mental health support etc for hidden disabilities. Even babies display signs that they may have special educational or sensory needs, and it affects the parents more than it would those of a neuro typical child. This would save so much time later on, when our children struggle with nursery and school, when they are sent to the headmaster instead of the Sendco and when parents feel institutionally gaslit and question their own perceptions of their child. 45. 17-year-old son When my very violent son was in year 9 (age 14) and my daughter was yr 11 (age 16) early help were involved by the school. Their only suggestions were to call the police when my son became violent and for my daughter to stay with my sister. My daughter now lives permanently with my sister and hates me because as she sees it, I did not keep her safe. Admittedly my son’s violence did decrease after she moved out, but I did not feel it was a long-term answer to keep my kids apart. However, early help thought it was a great achievement and closed the case, so now my daughter is 19 living with her auntie and my son is still with me. 46. 12-year-old son The early help does not happen because it takes so long to get diagnosis. 47. 8-year-old son Early help are for neurotypical children with parents that can implement those strategies. Early help does not work for children with SEND and their families. Their only solution is to send you on ANOTHER patronising parenting course!! 48. 10-year-old son We've worked with early help several times over the years, we have literally been told there is nothing else they can do to support us. Have felt very judged by them and felt they thought it was our fault, until we did everything from cprg, Solihull, vig, separated parents etc and then they realised it wasn't. We are still in the same situation just my eldest now lives with his dad. 49. 12-year-old son Yes, we have we asked for respite when things were bad, and we were worried about our daughter getting attacked. Social services gave use money to take him out we have begged for mental health support and got nothing even when he tried taking his own life. Sadly, my background is mental health, and I am a social work student. So, authorities always say I am more qualified to deal with him than others. This is not a patient it’s my son. 50. 12-year-old son I can say this as I am training to be a social worker. I have, and they were shocking, thank god we managed alone with his worker promising the world then falling to call or even show for 4 weeks I then called her and she had shut the case he could of been dead (was half term) no-one would know. And not one phone call during either lockdown to make sure he and us are safe. It is disgusting. 51. 7-year-old daughter I personally was thankful for the early help we received but found the phrase 'lack of resources' regularly came up. Not to mention 'lack of funding' & 'untrained staff' within education setting / nurseries. 52. 9-year-old daughter and 11-year-old son. Both ASC. In a nutshell, Early Help basically consisted of being blamed and accused of poor parenting. 53. 6-year-old son Supported as mediation; they basically changed the narrative from us being bad parents to having a challenging situation. 54. 16-year-old son A mixed bag, with had good support workers and dismal ones. The main problem is they are with you for such a short time then try to pass you to someone else which is awful for an autistic person as there no continuity. There is nothing after early help when their time runs out as they are only allowed a certain time frame with a family then they get pressure from Mangers to sign you off but there no other service to give you that support. 55. 9-year-old son I have refused referral back to early help as in my experience they focus on parenting skills not on my child- I have had enough of parenting courses .... I actually want support that is child centred and not a tick box exercise. 56. 7-year-old son. We had early help for 7 months. They met with my child maybe 5 times, promised to meet each week and work with him, introduce Elsa, protective behaviours etc but nothing materialised. I still do not know what early help do! 57. 2 autistic sons aged 13 and 16 Complete waste of time - multiple meetings over many years which achieved nothing - could not even get one of my boys assessed for adhd/asd despite multiple professionals saying this was needed. 58. 15-year-old daughter Early help were good at the time, but the support is short-lived. My daughter was able to access therapy and I had support from a brilliant behaviour expert who I could ring/email. The downside was that her therapy ended mid-pandemic and the loss of that support hit her hard, leading to very difficult behaviour issues. 59. 9-year-old son What early help?

How has the pandemic impacted on your child's well-being? 60. 6-year-old daughter My child has become completely unable to cope with from zero serious behaviour incidents to now multiple incidents a week wherein for example she will become so overwhelmed that she has at aged six trashed the classroom and thrown every item on the floor with all other kids having to be removed, to lashing out and hurting others. In some cases, several children in one incident. She describes herself as feeling sad but not knowing why. And she sobs when she is home such is her distress from her day. 61. 6-year-old son In a word, catastrophic! Trying to keep him learning, with very service we depended on stripped away, resulted in his extremely physically violent behaviour skyrocketing. He has since been told his school cannot meet his needs. So, the pandemic has made his world about as small as it could be. He has done about 2 hours of home schooling in the last 11 months. His self-esteem has never been lower. 62. 9-year-old son has become a recluse ... refusing to go out of the house; scared of the Virus; scared of all the deaths.... scared that he will lose me and be all alone. He has lost interest in doing anything outside the house. 63. 8-year-old daughter Mental health has risen and no longer has the want and the drive to do anything. She is sad bored and can be tearful. Isolating herself from the rest of the household. 64. 12-year-old son Pandemic - has resulted in lack of motivation to do .... anything. 65. 8-year-old son Pandemic has caused him to be more isolated. He cannot do contact by zoom/phone-call. In some ways he has benefited- smaller class size, more adult support, less noise, not having to eat in dining hall, being able to go to school in PE kit, not having to change shoes. Will refuse to wash hands but solved by giving him wipes. 66. 15-year-old daughter She spends all her time practically in her room, reluctant to go out. Last time in a supermarket she head butted a lady in the back I believe due to being overwhelmed because she had not been out for so long. (She went out following first lockdown reprieve) 67. 16-year-old daughter the pandemic's effect on my 16yr old has meant she is less likely to want to run away/be violent/risk police/covid. She is calmer with less social demands but is now showing signs of depression and lack of educational provision (she wants more, only gets 6hrs a week) is leaving her bored, hence the depression. 68. 11-year-old daughter The pandemic has decreased my child’s ability to have flexibility in her routine which has in turn increased her stress levels and increased her meltdowns. It has caused her to become isolated in where she does not want to exit isolation because it’s much much more harder for her to integrate back in to society/ educational settings or even into a shop for little things (as we have experienced, the shops seems to be on a changing the aisles around thing at the moment ready for Easter and she’s only just got past Christmas, yet her trips limited means she can’t watch the shop changes but instead walks straight into the change without warning) 69. 12-year-old son Although his had a few low days his anxiety has reduced being away from the school environment. His attending all his lessons on zoom, he is participating, he is actually thriving being out of school. 70. 16-year-old son Badly. My teenage son barely went out before the pandemic but now we cannot get him to even walk down the drive before showing violent challenging behaviour. He is completely unable to engage with a zoom class or to do any activities at home other than re-watch clips of CBeebies type programmes. 71. 7-year-old daughter My daughter has found Covid very upsetting. Triggering more meltdowns than usual. 72. 11-year-old son The pandemic has made my son 100x worse, he is so aggressive to everybody now. He dislikes babies and toddlers; I cannot take him out as he will attack babies and toddlers. Once we had police involved as he did. He is like it in all settings. I have asked for help by Camhs, but I am getting told it’s just autism and you need to keep taking him out in the community with carers to get him used to kids. One he is too aggressive towards the carers and will not go out with them. He will not leave the house, I got him into school as his aggression towards me is too much but someone from school has to pick him up and takes 2 of them to get him into the vehicle. His Normal transport for school refuses to take him as too aggressive why school helping me with that as I cannot drive. School has to put so much in place now as he too aggressive there too. He has his own room in school now with a 1:1. They just applied for 1:1 funding. They are even asking for help and all Camhs are saying it is just autism. Even school saying more going on as half of their students are autistic and never came across certain behaviours my son is displaying. But these professionals are not helping at all and now has put my son on the edge of care plan. I have been told if things do not improve soon, he could be taken from my care. So, I’m fighting for actual help he’s is seeing an education psychologist soon and somebody from the child on the edge service (not real name can’t remember but they don’t see families till child is on the edge of care). Every lockdown his behaviour got worse. It totally sucks. 73. 15-year-old daughter. During the first lockdown she became very depressed, had suicidal thoughts, self-harmed and ran away from home often searching for outside contact with other children. Her behaviour became more violent towards all family members. 74. 9-year-old son Child went from having difficulty going out to hardly managing to go out at all, he's gone for three walks since March. Child now thinks virus is his fault and if he dies it will get rid of the virus, no amount of logic will change his mind. 75. 16-year-old son He was starting to make huge strides in being independent, braving going for walk alone, now he has regressed and never goes out, sleep pattern is worse than it’s ever been. The one benefit is when he been able to enjoy video call learning with a tutor. 76. 11-year-old son My son is very much in denial about covid and can get angry and upset about it. Before Christmas I had a phone call from his teacher (send school) as my son told his class he would jump in front of a train if there was another lockdown and whether I thought my son was suicidal. I don’t think he is, but he has definitely been affected by it and increased his anxiety. 77. 11-year-old son At home my son has become very repetitive and controlling. He refuses to be in the same room if someone is eating or drinking something he dislikes and has a new obsession about clearing rubbish. 78. 9-year-old son first lockdown was awful. His violence increased, probably triggered by anxiety at a change in routine. And something he did not understand. We essentially kept that lockdown since March (with the exception of school) because we knew there would be other ones and wanted to alleviate any violence due to change in routine. 79. 10-year-old son My son’s anxiety at the unknown and the killer virus went through the roof. He would not even do homework before the pandemic because schoolwork and home were separate in his mind, so being asked to do schoolwork at home was a huge demand, let alone coping with the change in routine. The first episode of very extreme violence from him was after 10 minutes of attempting to just look at the work sent by school. The frequency and severity of the episodes increased overnight from about 3 per week to 7 or 8 daily and he also began self-harming (biting, hitting himself and threatening to with knives). He did not manage any schoolwork for two months and we sent him back to school after three months (June) when we just couldn't cope with the violence and the decline in his mental health anymore. By this point, he was repeatedly stating several times a day that he wanted to die, which was something completely new and started in June. After the initial fear of going back to school (it took 50 minutes and 2 parents shuffling him along to walk from the car across the playground to the entrance), he settled into his tiny special needs bubble for the last month before the holidays. It took this time, plus the 7 weeks of holiday to calm him enough to stop him wanting to die and to sleep on his own again. 80. 11-year-old son Generally behaviour has improved as demands and stress of school has reduced. Things got bad again in the second half of autumn term when he became overloaded and therefore dysregulated. Masks during the school day but behaviour deteriorates at home. In many ways, the pandemic has been helpful to my son who has school anxiety and really does not like school, he prefers to be at home and is calmer in his own home environment. There are fewer meltdowns and outbursts as fewer demands, and he feels happier and safer at home. I have started to question whether I should actually bring him out of school as it has made me realise that it may not be the best environment for him. On the downside there have been fewer opportunities to socialise and as my son is an only child this is detrimental as he does like and thrive on positive social contact. He has been very isolated since Christmas. 81. 9-year-old son The isolation has impacted greatly on my child's wellbeing. Not mixing socially with peers has an enormous detrimental effect on mental health, confidence, and self-esteem. Being afraid to go out creates even more anxiety than usual.

Has behaviour worsened over the pandemic? 82. 9-year-old son Yes, definitely escalated. It wasn't easy before, extreme meltdowns, self- harm, physically attacking me. It's all increased. Now the sleep issues have increase too. 83. 20-year-old son His behaviour has deteriorated, and the violent episodes have increased. He lost his apprenticeship due to his behaviour during COVID and because he now has a reversed sleep cycle. He goes to sleep at 7am and wakes at 5pm. His anxiety levels are off the charts and this has impacted his mental health and behaviour. 84. 6-year-old daughter Yes significantly worsened. A number of factors but hugely behind her peers educationally and now she is back at school feels this shame so strongly. Her sensory issues have increased massively almost like a break from the classroom has made it impossible for her to cope in one - despite there being 1/3 of the kids. 85. 6-year-old son Significant deterioration. There is no fuse, we walk on eggshells and he has total control over us. 86. 8-year-old daughter The pandemic has caused my daughter 8yrs to have increased violent behaviour the stimulation and routine is not there like normal day to day life simple tasks aren’t easy for her to do atm. Sense of feeling caged in with no reason to do things. 87. 8-year-old son Behaviour worsened as not able to regulate himself doing things like swimming and get out as much. 88. 12-year-old son Not really only the not knowing when he would have to return to school increases anxiety and frustration. It is almost as if we have got our son back removing him from that environment. Sadly, hearing how teachers speak to his class u see why he feels frustrated (no EHCP we have been refused 3 times so his in a mainstream school) 89. 16-year-old son Yes. Behaviour has worsened to the extent that he has been taken out of him special needs college and put back in the autism base he was in last year at school. This is because he has been attacking staff and pupils. We are currently fighting this with SENDIASS. 90. 11-year-old daughter She has become extremely violent, we have had an increase in explosive behaviours an example is, her schoolwork has been set for 6 hours a day on a P.C.- we have to limit it as it’s ruining her eyes, giving headaches which then affects her moods and outbursts. 91. 7-year-old daughter Absolutely. Not having her usual freedom to see people or do fun things has had a big negative impact. 92. 16-year-old son He has been much more in control of his physical violent outburst which had reduced dramatically before lockdown, but he is now often very verbally abusive, and his controlling behaviour has increased because of his need for security in such uncertain times. Also sleep patterns are all over the place. 93. 11-year-old son He is at school, but it’s taken this long for him to start doing work and engaging. We had a week of home learning and he would not engage in google class and would do things like play with the microphone or lick the table. There has been a huge issue about him using the laptop at school and throwing it on the floor when frustrated. The laptop is making his behaviour worse, but all the lessons are on google as need to be open to kids at home. He also had a major meltdown about washing his hands first thing although school have solved it by making him wear gloves until he is calmer and ready to comply. 94. 9-year-old son 1st lockdown - yes... violence, challenging behaviour increased. I was furloughed to support him. 2nd lockdown - schools remained open so his behaviour was consistent. 3rd lockdown – home-schooling provision is amazing, and he has a routine and is engaged most of the time. VCB is minimal compared to when at school. 95. 9-year-old son Behaviour has worsened as children are cooped up. Sibling bickering is at an extreme end of the scale with SEND children. Becoming obsessed with a sibling as there is no other company leads to a claustrophobic, unhealthy environment which can explode like a tinder box. Not getting enough outdoor time or exercise creates sensory integration issues so the child never feels comfortable in their own body leads to complicated behaviour explosions. Addiction to screens causes arguments and meltdowns. Lack of tiredness equals problems sleeping and maintaining healthy sleep patterns. Anything else that might be useful? 96. 16-year-old son This journey has had a huge impact on our family’s wellbeing. My husband had a heart attack, and we have all been repeatedly physically attacked by our son. We have been unable to socialise or go out as a family for years. This last year we have not even been able to visit our parents’ homes. Previous poor experience with CAMHS. They are currently prescribing Fluoxetine, but this has not helped with aggressive behaviour. 97. 7-year-old son. The blame game from school and mandatory services needs to stop. Our children have issues/struggles/disabilities. Stop blaming the parents for the child’s struggles and start supporting the families and doing what services are supposed to do, stop basing everything on money! These are children’s lives we are trying to support! 98. 16-year-old son The biggest problem we've had is schools telling us that because he's clever, he's choosing to misbehave. Not all kids with PDA/autism have learning difficulties, a common misconception I find. This leads to them being treated in the wrong way. 99. Six-year-old daughter It is evident to me that my daughter is almost certainly autistic as well as the other diagnoses she has. I believe there is strong reason to be concerned that families like ours, where the child has been adopted, are fobbed off with the single aim of delaying the need for service provision. 100. 7-year-old daughter 6) Absolutely more staff training is needed with schools. Not just about identifying additional needs but practical hands-on training in spotting trigger issues & how to deal with challenging behaviour. Sadly, not enough training is in schools regarding identifying the differences between meltdowns (out of a child's control) & behaviour that they can control. Not to mention family support too! Sadly, schools are too quick to exclude children as they don't know how to cope with additional needs, or they won't. Resorting in the option to send them home either for the rest of the day or a couple of days. 101. 6-year-old son the loss of the swimming pools and gyms for us has been awful, his regulation has been so impacted by not having his swimming. 102. 16-year-old son I feel the combination of the pandemic and my son turning 16 means all of a sudden even thou they know he not capable of dealing with his own affairs they suddenly expect him to be, support workers keep changing or are non-existent and as the pandemic has progressed, we basically been forgotten about. 103. 9-year-old son This pandemic has bought my child and I closer together - for that I am truly thankful. My child’s Social and emotional development has stalled further and this will be more apparent when he eventually returns to school - the long-term impact on him is yet to be determined but I am concerned that it will affect him for a lot longer than I anticipate. 104. 2 autistic sons aged 13 and 16 One of my boys (age 11 - small and petite child) was seen in hospital for glandular fever. The Dr misdiagnosed quinsy. My son had a panic attack (a little swearing and shouting - no violence) and the Dr called a security guard and threatened my son with being taken far away from his mum. My son now is diagnosed with medical trauma. Other son was in a and e with a minor burn. It was dressed and we were told it needs no further treatment but we HAD to wait to see a Dr. My son was beginning to meltdown swearing etc. To avoid a full-on meltdown I explained to the nurse we couldn’t wait and would attend the GP tomorrow - also explained sons diagnoses repeatedly. Nurse reported me to social services - had a spot check from SW next day - accusing me of refusing treatment (burn was treated and bandaged in a and e then seen at gp the next day) SW admitted the referral bore no resemblance to the reality and it caused big distress again. 105. 15-year-old daughter 6. Regularly targeted by local youths and despite reported as hate crimes, little action is taken so she is unable to access the community safely. 106. 5-year-old son My 5 yo was restrained in mainstream year one (I was told Team Teach) but he told me there was a teacher on each arm over him not walking to the room they wanted him to go to. I have been affected mentally when his behaviour escalated. He is highly anxious & worsening during the pandemic. He verbalises more now he is 6 quite graphically, rumbles constantly & is more aggressively challenging esp over changes in school & any tiny transition. He tries to control any conversation, anything & presents more PDA traits by the day. Any social situations will be 20x harder after the “bubble” of lockdowns are lifted. His DX is ASD 107. 25-year-old son. Our son has ASD. He also has other complex neuro-psychiatric conditions including Tourette’s Syndrome, and trauma (he is our adopted son). During his teenage years he often ran away, and the police were regular visitors to our home. Mostly they were great. However, when he was 17, he was once very badly beaten up in the community (next town) having been lured to a "party" by a "mate" (anyone who talked to him he considered his "mate"). A group of people decided to re-enact a scene from the film "This is England" (our son is also mixed race) and set upon him - getting him onto the ground and kicking him. With the help of one of the women in the group, he managed to run away and was picked up by a police van on a nearby road. The police officer asked him if he had "had a drink" and he said yes (he had had coca cola - which, to him, was a drink). The van took him to hospital, where he was given a few stitches in his face. He curled up on a bed and was asked by the police officer if he wanted her to ring anybody. Again - being very literal in interpretation - he said no. She told him to "sleep it off" and she would be back in a few hours. So, he lay on that bed in the hospital for a couple of hours until she returned with her colleague - and gave him a lift home. He was traumatized and could not speak by the time he got home. He could not tell me what had happened (I found out from someone else). His phone had been stolen, his jacket burned on a fire in front of him, and his clothing was torn and blood-stained. When I discovered the detail of what had happened to him, I threw up. I rang the police to report the racist incident - which they said I could not do as a "third party" (not true - which I knew as I was a local authority equality adviser). I also complained that the police officer had not picked up on his autistic disorder, which she had mistaken for being "on something" - and the questioning was not appropriate to ensure that he got someone to be with him in hospital. He was 17 at the time, but much younger emotionally. The police and other authorities need quite a bit of training around use of language in extreme situations. 108. 15-year-old son My son has also been discriminated against at school. The head at school told him his conditions are made up out of a book an excuse for bad behaviour. He has ASD and ADHD as well as epilepsy and Specific learning difficulties. He has been told he is using his ASD as an excuse. He has been informally excluded for his inability to wear a face covering even though he is exempt. He was told to wear one or go home. He had his first meltdown in school before Xmas and the head said he wants him sectioning and excluding.

Yvonne Newbold MBE February 2021