Please note this expert event is now finished, but please do read through David's responses here for advice and information about challenging behaviour.
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Hello everyone,
founder and co-director of I Support Behaviour David Cocoran (who will be posting as IceDemon) is going to join us her on the community for an Ask the Expert event on challenging behaviour, from Monday 22 - Friday 26 May.
He has over 30 years experience working with autistic people and people with learning disability and has a huge amount of experience in supporting people with complex care and support needs. He's also an expert by experience, as a sibling to an autistic brother, has daughter that is autistic, and child with a learning disability from a very rare genetic condition.
If you're looking for some advice or guidance about someone in your life whose behaviour is challenging - whether this is born out of frustration, distress, or attempts to communicate - please comment in the thread below
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I am very much looking to supporting next week with the 'Ask the Expert' event running from the 22nd to the 26th of May. I have been working in autism and learning disabilities since I was 19, that is over 30 years now. I have worked in a range of different settings, including as an academic and researcher in autism and learning disabilities as a Senior Lecturer in Psychology.
I set up I Support Behaviour nearly 10 years ago. We are a small team that work with people (children, young people, and adults) that have a range of complex care and support needs. This includes behaviours that may be borne of distress, frustration, anxiety, challenges with communication, and other reasons. Our team provides assessment, input, and a range of services that will help to improve the overall quality of life of a person and their family.
Our team works with less complex challenges that will still greatly improve lives and increase independence. We also work with much more complex challenges including family, school, placement breakdown, concerns about supporting the person away from family and community, and inpatient admissions under the mental health act. Our team has successfully prevented breakdowns, hospital admissions, and we have supported people that have been in hospitals under the mental health act to return to their community and family. In some instances, these individuals have been in hospital for up to 22 years.
I have three children. Our eldest is an autistic girl that has a number of challenges in her life. Our middle child does not have a diagnosis. Our youngest has a very rare genetic condition and has a learning disability as a result of this. My brother was diagnosed autistic as an adult and his three children are autistic. I was diagnosed with dyspraxia and dyslexia as an adult.
Maurice I have a number of families who I know that would like to attend so do they have to be members of mencap ? If so how do they join and if not how do they sign up to attend this meeting please
Hi Jo, that's great! We're running this as an Ask the Expert event on Health Unlocked, so if the families you know would like to leave a question for David they can do it on this thread for him to answer next week. Hope that makes sense!
it’s a bit of an upsetting question to ask but I need to understand when someone’s non verbal and you know they’ve suffered abuse how do you best support them.
This is a very difficult situation to be involved with and to manage. I do hope that you have a network that are supporting you also.
This question will require answer to some further questions:
* How old is the person?
* Where is the alleged abuse taking place?
* What part of the country/UK are you in?
* Is there an allocated Social Worker involved?
* What type of abuse is this?
If this is any form of abuse that is harmful to the person, physical, sexual, or emotional abuse, it is essential that this is reported to the police immediately. It will be very important that the person is removed from another is causing abuse or harm. People to report the abuse to:
* Police - is this is a person that is or has been physically, sexual, emotional. Has a crime been committed?
* Your Social Worker
* The Local Authority Safeguarding Team (you can google the correct team for your borough/Local Authority
* Your Safeguarding Lead and manager if this is happening in a place of work
It is essential that you write a full and detailed report. This should include as much information as possible. Where the abuse happened, when it took place, who was involved, the dates and times, and a detailed account. Provide as much evidence as possible to support the allegation.
Please note, safeguarding is everyone's responsibility. There is a duty of care to the person to take action.
I will ask Maurice and Mencap to follow up with you away from the thread.
I was updated by Maurice and he let me know that the person is safe and there re no current safeguarding concerns. I just had to check first. I would be negligent if I didn't.
There is a lot of information that I can provide you. It will be helpful to get your email address here and I can forward to you resources and information that is helpful.
It is important to know, if the person is non-verbal, how they are supported to communicate and to understand? Are pictures/symbols used? Also, is the person being supported by family or with a care provider?
Either way, if they are supported by family or by a provider, a 'Trauma Informed' approach is required. This may require specific training. Whoever is supporting the person needs to know how best to support the person and a particularly useful framework to put in place is something called, 'The Capable Environments' framework. Again, this may require a level of training to family/care staff.
Supporting somebody that is autistic, has limited communication, and a learning disability, requires:
* Training
* Guidance
* Supervision and support
* The implementation of specific frameworks and strategies
* Systems and processes in place to ensure that this are being utilised and followed carefully and accurately
One of the problems is that somebody that has trauma, is non-verbal, and autistic, will find it very difficult to access trauma therapy through psychology. Even if this is adapted to the person's needs, it may be very difficult for the person to reflect upon the situation and their thoughts/emotions. They may also find it very difficult to reflect upon the traumatic events themselves.
A Trauma Informed approach to care, if implemented correctly, minimises the likelihood that the person will be retraumatised. It works on building trust, relationships, and supporting the person to find ways to manage their emotions when they are distressed.
Please do provide me with your email so that I can forward over resources.
my email is jofms@hotmail.co.uk my son is non verbal and is in a carer home with nursing care he has severe LD Autism cerebral palsy severe epilepsy etc etc.
Thank you for providing me with your email. I will forward some things over to you over the weekend. I would like to ask more questions and that way we can correspond more and I can do my best to provide answers.
Thank you Jofisher. Apologies for the delay. I was away for the long weekend with family and I am catching up this morning. I will send some things over this morning and schedule a catch up with you.
Maurice, I will not be able to attend but need help with a particular issue. My son is locked into a compulsion to put things down the loo, which is causing major problems where he lives and gets in the way of his life and relationships, because he has to do this wherever he is. We have lots of help but he will need to want to change this himself, but he just denies that it's happening. My strategy is to avoid pushing or shaming him about it, which only sets me against him and prevents him thinking about whether he wants to stop. As with any addictive behaviour he sees intervention as a reason to double down and just hide it, which at least shows that he knows it is 'wrong'. There is something behind this related to order and control, so it is doing something for him. Have you come across this? He is medicated for various conditions, including bi-polar and anxiety and I do not want to throw more medication his way.
My son puts tiolet rolls down the loo aswell . He has various habits that rotate, each one last for a few month then stop for a little while ,, , I am always trying to hide the tiolet rolls but he manages to find them , he has done it at his daycare facility aswell . He has been like this from a toddler ,. He is 39 this year and lives at home , . Other habits are getting all his shoes out of his wardrobe ,lining them up by his bed , putting his socks in them then putting them back in the wardrobe . Also anything I leave out he puts away or in the wash basket . I think its a comfort thing he has very little speech and understanding . 24/7 care is required .
He was extremely hyperactive as a child, is seen by an NHS learning disability team who use ICD code F72.0 severe learning disability, ....Obsessive compulsive disorder F42 , when I read the meaning of these codes they use I found it a very upsetting outdated name for LD. . Im not much help but I thought I would put a behaviour problem on here that someone might empathise with .
Thank you for sharing this information about your son, and what you have described as compulsions to put thing into the loo. You have mentioned in your post that 'it is doing something for him', and you also mention order and control.
In the first instance, I would agree that I would not want to provide any more medication. This option would be an absolute last resort. It is helpful to know that your son has two conditions, bi-polar and also anxiety. I would also agree that it would not be helpful to overly confront him about the behaviour. This may just generate more anxiety and be counterproductive.
With any behaviour, it is helpful to gather further information. This can help to develop a much clearer picture of why a behaviour is happening, and then in turn what can be put in place to address this.
Here are a list of initial questions that it will be helpful for me to have the answer to:
What items are being put into the toilet?
How regularly does this behaviour occur? (Several times per day, several times per week, several times per month)
What is typically happening when the behaviour happens?
What would happen if you intervened and blocked the behaviour. E.g. locked the toilet doors, blocked access to the toilet? (this is a thought question only and not something I am suggesting or recommending - the answer to this as a theoretical question is helpful)
Is this a relatively new behaviour, or has it been happening for a long time?
It will also be helpful to know (without sharing too much information) a little more about your son. Is he verbal, partially verbal, or non-verbal? Is your son cognitively able or does he have a learning disability? Does your son have a diagnosis of autism?
I have a host of other questions, but it will be very helpful to start with the answer to these.
I just want to check if you have seen my previous message with questions? I will be able to advise and support you, but I will need the answer to these.
I am happy to take the conversation away from here if we need to. If I need a more detailed update, I will give you my email address and we can continue the conversation.
Hi, my son is nonverbal autistic and low functioning. He has problem he cannot wait and if doesn't get his way he shows challenging behaviour. Whether it is getting into car or bus, or going to school and if he is late he will exhibit challenging behaviour. He also wants to go out all the time but gets bored and then tries to leave place within say 5 minutes. How to increase his interests - he only likes sticker and letter tracing activity and dancing to music and is now 22 years old. Any help or advice will be greatly appreciated
Thank you for this. It will be helpful to know if your son is using any picture/symbol communications systems? This is a very common challenge and can be quite a barrier to accessing all aspects of day-to-day life.
Waiting is often a skill that needs to be carefully taught. If you can let me know if your son has some form of communication system to support him, I will be able to advise on this matter.
For now, if you are able to respond to this thread, I will be my best to suppot you. If I need you I will provide you with my work email and we can continue this conversation away from here.
Thank you for this. I hope I will be able to help you. It will be helpful to know if your son is verbal, and cognitively able. Or, if your son has any associated learning disabilities and communication challenges?
Can I also ask, when he has been sectioned previously, has this been related to the bipolar? Or has it been related to behaviours directed towards the care staff?
There is likely to be a lot more information that I am going to require from you. I would like to know who the care provider is and how well you think they are supporting your son?
It will be interesting to know if this is the care staff and their lack of experience and knowledge to support your son. How well are the staff supported by their line manager, and how regularly do the meet to discuss any concerns that there are with your son, and update the support plans?
If we need to, we will continue this conversation beyond here. If you are able to answer my questions, but I still need more information I will give you my email address so that I can continue.
Parents of ASD 39 year old with extremely challenging behaviour at best of times but now made very much worse as practically an alcoholic, becomes aggresive, abusive and destructive. Recent event in our home, he lives with us, resulted in arrest, Court Order not to return home for 28 days! Crying on doorstep, desperate, no money, let him in but back to drinking etc etc. He desperately needs help, resists any but we just cant cope anymore. Adult Social Services, GP no help because he has to engage with them so how do you help someone who wont be helped but is ruining your own lives, and making you ill.
Thank you very much for this post. This sounds like a very difficult situation. It will be helpful to speak to you in person about this. I am going to give you my email address. If you follow up with me there we can arrange a phone call or Teams meeting.
Best wishes
David
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