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do social communication difficulties due to autism count as complex verbal comms
- Branka
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11 months 3 weeks ago #285791 by Branka
do social communication difficulties due to autism count as complex verbal comms was created by Branka
I’ve got a PIP telephone assessment for my son next Wednesday. I’m his appointee so I’ve been told that I can speak on his behalf during the assessment. He’s got several diagnosis related to autism - Asperger’s syndrome, dyspraxia, sensory processing, anxiety and Tourette’s. He’s highly functioning so has got good verbal skills. Having looked into guidance for Question 9, it seems to be implying that if you can understand complex sentences it means that you don’t qualify for needing communication support. My understanding was that difficulties with social communication count as complex verbal communication.
My son has had years of Speech and Language Therapy and social communication support from medical professionals due to not being able to engage in communication, particularly with people he’s not familiar with, having one-sided conversation/ going off topic, misunderstanding other people, being too direct and other issues typical for Asperger’s. Also, Tourette’s syndrome becomes more apparent when anxious and stressed. I have been helping him implement professional advice on daily basis.
He’s started Uni this year so going through a big change which is difficult for people on ASD but also hasn't got EHCP support any longer. Lack of communication skills is causing difficulties as he's not getting any support, he’s becoming increasingly isolated and his anxiety and depression are getting worse. This is causing concerns for his wellbeing and safeguarding. I’m hoping that he will qualify for ‘Needs communication support to be able to express or understand complex verbal information’ criteria. Am I right to argue this based on the above points or does it mean if he can understand complex sentences, he doesn’t qualify?
I also have a question about planning and following journeys - he's travelling by himself on familiar journeys but safety is an issue, as has had several near misses, particularly when stressed i.e. walked into traffic, got knocked off his bike by a bus. My support is via messages/phone calls/tracking app to check for any disruptions in travel and to calm him down when feeling stressed. Would this qualify as help to plan/follow unfamiliar journeys?
The assessment centre has also refused to record assessment as the appointment has been changed once already. I have asked for the original assessment to be moved as couldn't get time off work due to lack of 7 days notice. Not sure if I need to start a new thread for these two questions.
My son has had years of Speech and Language Therapy and social communication support from medical professionals due to not being able to engage in communication, particularly with people he’s not familiar with, having one-sided conversation/ going off topic, misunderstanding other people, being too direct and other issues typical for Asperger’s. Also, Tourette’s syndrome becomes more apparent when anxious and stressed. I have been helping him implement professional advice on daily basis.
He’s started Uni this year so going through a big change which is difficult for people on ASD but also hasn't got EHCP support any longer. Lack of communication skills is causing difficulties as he's not getting any support, he’s becoming increasingly isolated and his anxiety and depression are getting worse. This is causing concerns for his wellbeing and safeguarding. I’m hoping that he will qualify for ‘Needs communication support to be able to express or understand complex verbal information’ criteria. Am I right to argue this based on the above points or does it mean if he can understand complex sentences, he doesn’t qualify?
I also have a question about planning and following journeys - he's travelling by himself on familiar journeys but safety is an issue, as has had several near misses, particularly when stressed i.e. walked into traffic, got knocked off his bike by a bus. My support is via messages/phone calls/tracking app to check for any disruptions in travel and to calm him down when feeling stressed. Would this qualify as help to plan/follow unfamiliar journeys?
The assessment centre has also refused to record assessment as the appointment has been changed once already. I have asked for the original assessment to be moved as couldn't get time off work due to lack of 7 days notice. Not sure if I need to start a new thread for these two questions.
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- BIS
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11 months 3 weeks ago #285804 by BIS
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Replied by BIS on topic do social communication difficulties due to autism count as complex verbal comms
Hi Branka
You didn't need to start two different threads - so don't worry.
1. I have a relative with Asperger's so I understand a little of where you're coming from. Just be aware that the assessor may not have any knowledge of your son's condition, which are extremely complex regardless of whether he is high functioning, and I would absolutely say you should be fighting for he needs communication support. You know what this means. Put a list of bullet points from what you have said below to make sure that you say them all eg
(and so on). What you have said perfectly conveys - just don't let the first words out of your mouth be he is high functioning with good verbal skills or that is all the assessor will hear. And yes, fight for he needs communication support to express or understand complex verbal information.
Your son is highly vulnerable and yes, he needs support, which you offer. You should also say what would happen if you were not available. And the examples you give show just how vulnerable he is.
I'm not happy to hear the assessment centre have refused to record the assessment. It's more likely that an assessor has refused to be recorded. If you have a lap top as well as a phone - put your phone on loud speaker and record the call on your laptop or use an app on your phone where you can record at the same time as making a call, or if there is anyone around with you who can record on their device - you should do so.
The best of luck
BIS
You didn't need to start two different threads - so don't worry.
1. I have a relative with Asperger's so I understand a little of where you're coming from. Just be aware that the assessor may not have any knowledge of your son's condition, which are extremely complex regardless of whether he is high functioning, and I would absolutely say you should be fighting for he needs communication support. You know what this means. Put a list of bullet points from what you have said below to make sure that you say them all eg
- one-sided conversation,
going off topic
misunderstanding other people
not engaging with verbal cues
being too direct
(and so on). What you have said perfectly conveys - just don't let the first words out of your mouth be he is high functioning with good verbal skills or that is all the assessor will hear. And yes, fight for he needs communication support to express or understand complex verbal information.
Your son is highly vulnerable and yes, he needs support, which you offer. You should also say what would happen if you were not available. And the examples you give show just how vulnerable he is.
I'm not happy to hear the assessment centre have refused to record the assessment. It's more likely that an assessor has refused to be recorded. If you have a lap top as well as a phone - put your phone on loud speaker and record the call on your laptop or use an app on your phone where you can record at the same time as making a call, or if there is anyone around with you who can record on their device - you should do so.
The best of luck
BIS
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- Branka
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11 months 3 weeks ago #285846 by Branka
Replied by Branka on topic do social communication difficulties due to autism count as complex verbal comms
Thanks Bis for your kind words and your advice. Really appreciate you responding to my query, seeing that the assessment is next Wednesday. This is a very confusing and stressful process and as you say, young people with Asperger's in particular are highly vulnerable though that might not be very obvious, which only makes it more difficult to get any support.
Did you have any advice on my second question regarding planning and following journeys? My son is taking familiar journeys by himself, mainly by bus, getting on and off at the same stops. If there are any changes or diversions he gets very distressed so I help him plan and follow his journey via a tracking app, send him messages to let him know when the bus is arriving and if there are any diversions talk to him over the phone and via messages to help him calm down.
The biggest concern is his safety - when distressed/anxious or even just distracted due to poor executive functioning and concentration due to sensory/dyspraxia. He has had several near misses and has been hit by a bus once though luckily the driver managed to slow down so he wasn't badly injured.
My son is insisting on being independent when going to Uni, visiting friends locally etc and travelling by himself and as we don't drive, we can't just drop him off and pick him up. It would really help if he could call a cab when feeling too distressed but we can't afford that expense and he'll also need to plan it ahead so would be good to have some money set aside in advance.
Very helpful guidance document from this website pointed out that 'the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.'
Can I argue that based on the above points, my son should qualify for basic mobility rate as risk to his safety is high, in spite of the fact he is travelling by himself on familiar journeys and support is given via phone/messages rather than in person?
I'm worried that because he's at Uni that they might think that he's capable enough to do other daily activities such as planning a journey but this is not as straightforward as it sounds. It all depends on his frame of mind and whether there are any unexpected changes as well as sensory i.e. big crowds, feeling dysregulated all affect his concentration and ability to plan and follow journeys. He's also just started Uni so struggling to manage this big change in his life.
Many thanks for your help and kindness.
Did you have any advice on my second question regarding planning and following journeys? My son is taking familiar journeys by himself, mainly by bus, getting on and off at the same stops. If there are any changes or diversions he gets very distressed so I help him plan and follow his journey via a tracking app, send him messages to let him know when the bus is arriving and if there are any diversions talk to him over the phone and via messages to help him calm down.
The biggest concern is his safety - when distressed/anxious or even just distracted due to poor executive functioning and concentration due to sensory/dyspraxia. He has had several near misses and has been hit by a bus once though luckily the driver managed to slow down so he wasn't badly injured.
My son is insisting on being independent when going to Uni, visiting friends locally etc and travelling by himself and as we don't drive, we can't just drop him off and pick him up. It would really help if he could call a cab when feeling too distressed but we can't afford that expense and he'll also need to plan it ahead so would be good to have some money set aside in advance.
Very helpful guidance document from this website pointed out that 'the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.'
Can I argue that based on the above points, my son should qualify for basic mobility rate as risk to his safety is high, in spite of the fact he is travelling by himself on familiar journeys and support is given via phone/messages rather than in person?
I'm worried that because he's at Uni that they might think that he's capable enough to do other daily activities such as planning a journey but this is not as straightforward as it sounds. It all depends on his frame of mind and whether there are any unexpected changes as well as sensory i.e. big crowds, feeling dysregulated all affect his concentration and ability to plan and follow journeys. He's also just started Uni so struggling to manage this big change in his life.
Many thanks for your help and kindness.
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- BIS
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11 months 3 weeks ago #285891 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic do social communication difficulties due to autism count as complex verbal comms
Hi Branka
Sorry - I missed the question about planning and following journeys. Before I answer that, I just wanted to add to my advice the other day. I don't know whether you are doing the whole assessment or whether your son will be speaking at all. If he is speaking at all - it is absolutely paramount that you speak first and inform the assessor that your son will respond to any question with the answer he thinks the person who has asked the question (in this case, the assessor) wants to hear. So for example -
Assessor - "Could you plan a journey?"
Your son - "Yes". (Yes would be his answer regardless of whether he thinks he can or whether he actually can.)
This is an important point to get across to the assessor - so they have some understanding of someone with your son's condition.
It matters not just for the assessment but how this makes him highly vulnerable when outside of your home. It makes him vulnerable to anyone who doesn't have good intentions or even someone who might try to help if he was in trouble. Because he will probably say he's understood something that he hasn't.
I also think you need to get across that you have spent years making your home environment safe and as manageable as possible for him to leave and come back to (and that has required very close support). Now he is in an unfamiliar environment where his mental health is already being compromised by lack of support and all his vulnerabilities are magnified in a way that is not obvious to those unfamiliar with his complex needs.
In terms of what you should be trying to claim for planning and following a journey.:
1b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological
distress to the claimant. 4 points.
1c. Cannot plan the route of a journey. 8 points.
1d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or
orientation aid. 10 points
You could argue 1b, 1c or 1d.
1b - This is easy to argue - as you have years of prompting him and supporting him and know the impact when he doesn't have support behind him. All his difficulties come into play here and you listed a couple of examples in your previous post.
1c is about planning. This not about actually taking the journey. Your son cannot plan the route of a journey, because he is unable to work out alternatives and where something may go wrong. So he may be able to plan how to get from your home to the corner shop - because this is something he has learned to do over a period of time. However, can he make a plan to go from your home to the local hospital - which is something he would have done rarely? No. Because he would not be able to make a plan that would incorporate if there was a diversion - eg the bus stop has been moved or bus has been cancelled. He has to be able to do these things:
• safely
• repeatedly
• to an acceptable standard
• within a reasonable time
I would argue that he can't. You can always give an example of how you have tried to help in the planning and if something goes wrong.
1d - You have already said the difficulty he has with unfamiliar journeys. He needs your assistance at the end of a phone. He is terribly vulnerable if something goes wrong. His communication difficulties, Tourette's coupled with Anxiety and Aspergers means that he could not follow the criteria already mentioned above. You have examples of when things have gone wrong and you should be ready to tell the assessor. His Tourette's in particular makes him less safe with the unpredictability of what he might say in a state of anxiety to a complete stranger.
You know him best, so argue for whichever points you think apply to him.
Hope it goes well
BIS
Sorry - I missed the question about planning and following journeys. Before I answer that, I just wanted to add to my advice the other day. I don't know whether you are doing the whole assessment or whether your son will be speaking at all. If he is speaking at all - it is absolutely paramount that you speak first and inform the assessor that your son will respond to any question with the answer he thinks the person who has asked the question (in this case, the assessor) wants to hear. So for example -
Assessor - "Could you plan a journey?"
Your son - "Yes". (Yes would be his answer regardless of whether he thinks he can or whether he actually can.)
This is an important point to get across to the assessor - so they have some understanding of someone with your son's condition.
It matters not just for the assessment but how this makes him highly vulnerable when outside of your home. It makes him vulnerable to anyone who doesn't have good intentions or even someone who might try to help if he was in trouble. Because he will probably say he's understood something that he hasn't.
I also think you need to get across that you have spent years making your home environment safe and as manageable as possible for him to leave and come back to (and that has required very close support). Now he is in an unfamiliar environment where his mental health is already being compromised by lack of support and all his vulnerabilities are magnified in a way that is not obvious to those unfamiliar with his complex needs.
In terms of what you should be trying to claim for planning and following a journey.:
1b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological
distress to the claimant. 4 points.
1c. Cannot plan the route of a journey. 8 points.
1d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or
orientation aid. 10 points
You could argue 1b, 1c or 1d.
1b - This is easy to argue - as you have years of prompting him and supporting him and know the impact when he doesn't have support behind him. All his difficulties come into play here and you listed a couple of examples in your previous post.
1c is about planning. This not about actually taking the journey. Your son cannot plan the route of a journey, because he is unable to work out alternatives and where something may go wrong. So he may be able to plan how to get from your home to the corner shop - because this is something he has learned to do over a period of time. However, can he make a plan to go from your home to the local hospital - which is something he would have done rarely? No. Because he would not be able to make a plan that would incorporate if there was a diversion - eg the bus stop has been moved or bus has been cancelled. He has to be able to do these things:
• safely
• repeatedly
• to an acceptable standard
• within a reasonable time
I would argue that he can't. You can always give an example of how you have tried to help in the planning and if something goes wrong.
1d - You have already said the difficulty he has with unfamiliar journeys. He needs your assistance at the end of a phone. He is terribly vulnerable if something goes wrong. His communication difficulties, Tourette's coupled with Anxiety and Aspergers means that he could not follow the criteria already mentioned above. You have examples of when things have gone wrong and you should be ready to tell the assessor. His Tourette's in particular makes him less safe with the unpredictability of what he might say in a state of anxiety to a complete stranger.
You know him best, so argue for whichever points you think apply to him.
Hope it goes well
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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11 months 3 weeks ago #285907 by Branka
Replied by Branka on topic do social communication difficulties due to autism count as complex verbal comms
That's great Bis, thanks a lot for your reply. I have been told that I will be doing the whole assessment and that my son just needs to be present at the beginning of the meeting. I hope that this will be the case as you're absolutely right, he will just answer yes to all the questions and won't be able or willing to talk about any problems with people he doesn't know well.
I forgot to ask in my previous question - do you know if a tracking app would be seen as an aid or appliance?
Also, if possible would be great to get a quick advice on descriptors in Question 5 regarding therapies. Where it says 'Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week' I am confused whether this means the therapy that takes more than 3.5 hours or the time spent on supporting someone to manage their therapy i.e. 3.5 hours of supervision, prompting or assistance?
He has had sensory therapy, CBT, speech and language and occupational therapy for dyspraxia throughout the year - I've been supporting him implement strategies at home, attended appointments and helped him implement professional advice as well as spent a lot of time communicating with the school so that he can get the right access arrangements/implement strategies and therapies at school. This has taken up a lot of my time so have included it in the above descriptor so hope it will be taken into account.
Good point about Tourette's - I didn't think of it in that context.
Through all my years of battling with the system to get the support my son needs, kindness of strangers and great advice I got from various helplines never cease to amaze me. Thanks a lot for taking time to respond and for your understanding.
All the best
Branka
I forgot to ask in my previous question - do you know if a tracking app would be seen as an aid or appliance?
Also, if possible would be great to get a quick advice on descriptors in Question 5 regarding therapies. Where it says 'Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week' I am confused whether this means the therapy that takes more than 3.5 hours or the time spent on supporting someone to manage their therapy i.e. 3.5 hours of supervision, prompting or assistance?
He has had sensory therapy, CBT, speech and language and occupational therapy for dyspraxia throughout the year - I've been supporting him implement strategies at home, attended appointments and helped him implement professional advice as well as spent a lot of time communicating with the school so that he can get the right access arrangements/implement strategies and therapies at school. This has taken up a lot of my time so have included it in the above descriptor so hope it will be taken into account.
Good point about Tourette's - I didn't think of it in that context.
Through all my years of battling with the system to get the support my son needs, kindness of strangers and great advice I got from various helplines never cease to amaze me. Thanks a lot for taking time to respond and for your understanding.
All the best
Branka
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11 months 3 weeks ago #285940 by Gordon
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Replied by Gordon on topic do social communication difficulties due to autism count as complex verbal comms
B
As a general rule, unless you can show that the "aid" was specifically created to help the disabled, then it will not be counted as one, as an example; route planning software; such as Google Maps will not be counted as an aid.
Regarding the therapy, it is the time that the claimant needs the assistance, etc., not the time that the therapy takes. As an example; if a person needs assistance with using a Tens machine then the DWP will take the time needed to fit the pads at the beginning of the treatment and to remove them at the end but not the time in between.
Gordon
As a general rule, unless you can show that the "aid" was specifically created to help the disabled, then it will not be counted as one, as an example; route planning software; such as Google Maps will not be counted as an aid.
Regarding the therapy, it is the time that the claimant needs the assistance, etc., not the time that the therapy takes. As an example; if a person needs assistance with using a Tens machine then the DWP will take the time needed to fit the pads at the beginning of the treatment and to remove them at the end but not the time in between.
Gordon
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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