PIP Guide:Taking Nutrition

 The next topic in the PIP series is Taking Nutrition. This follows on directly from the Preparing Food section. As mentioned previously, this guide is aimed at parents helping their autistic child to fill in the PIP form at age 16. Therefore the focus will be on issues that affect autistic people specifically, rather than disabilities in general.

Taking Nutrition: The Points System

The term “Taking Nutrition,” refers to the physical act of taking nutrients into the body. It includes the ability to bring food to the mouth, chewing and swallowing. It also includes the ability to cut up food and use utensils properly. This section does NOT refer to the nutritional quality of the food itself. Let’s consider the points system.

• If a person can take nutrition unaided, they score zero points.

• If they need an aid or supervision to take nutrition or help cutting up food they score two points. 
  
• If they need a therapeutic source to take nutrition they score two points.

• If they need prompting to take nutrition they score four points.

• If they need assistance to manage a therapeutic source of nutrition, they score six points.

• If they cannot feed themselves at all and need another person to do it for them they scoreten points.

Think carefully about which of these descriptors applies best to your child and fill in the form with as much detail and as many supporting examples as you can.

Some Points to Consider About Taking Nutrition

• Think how sensory differences may affect your child’s ability to take nutrition. A common issue is that autistic people may not recognise when they feel hungry.

• Do their sensory issues cause them to become fixated on certain foods? Does this heavily restrict what they eat?

• Do they have severe coordination issues that affect their ability to use a knife and fork safely?

• Do they get hungry late and night because they don’t eat enough during the day?

• Do they need reminding to drink enough water during the day because they are so absorbed in other activities?

• Do they use adapted cutlery or cups? 
  
• Do they have a real risk of choking when eating because of how they eat? Can they judge an appropriate amount of food to put in the mouth each time?

• Do they need assistance and supervision with portion sizes, for example if Prader-Willi syndrome or anorexia are considerations?

• If they suffer with depression, they may need prompting to eat meals.

Try and give specific examples for each point, as this will be important evidence to back up what you are saying. Prompting and supervision will probably be the strongest arguments that need to be highlighted when considering the needs of an autistic person.

PIP Guide:Preparing Food

 In my last two posts, I gave an  overview of the PIP application process and a guide how to fill in Section 1 and 2. In this post we will be looking at the first category on the PIP form: Preparing Food. The form needs to be filled out as accurately and honestly as possible. Some of the things that I will mention will apply to your child, and some will not, but this guide will hopefully give you some ideas of things to consider when filling the form. It is particularly important topay close attention to the points system and how many points are allocated to each section.

Preparing Food: The Points System

For the sake of this article, “preparing food,” means cooking a simple meal with fresh ingredients from scratch. Imagine the processes involved in cooking a basic meal; chopping and preparing ingredients, following a recipe and cooking the food. Bear this in mind when considering the points system.

• If you can cook a basic meal with no help, supervision or special aids you score zero points.
• If you need a special aid or appliance to cook, or if you can only use a microwave rather than a cooker, you score two points.
• If you need prompting to cook a meal you score two points.
• If you need help or supervision whilst cooking you score four points.
• If you cannot cook food at all, you score 8 points.

When filling in the form, you need to think about whether your autistic child would be able to cook a meal from scratch safely. Here are some things to think about. Remember that this article is aimed at autistic children so I wont be including things that might affect other disabled people, such as the deaf or those with limited mobility. There are some excellent guides online that cover ALL types of disabilities.

Safety When Preparing Food

• Does your child understand kitchen hygiene such as cross-contamination when cooking meat?
• Is your child safe around hot surfaces and would they be safe taking hot dishes out of the oven?
• Do they have the ability to use different appliances and kitchen equipment? A tin opener? A kettle? Knives?
• How is their understanding of time? Do they know that certain things require different times to cook and can they be alert to take things out of the oven at the right time so that the item is neither overcooked or undercooked?
• How would they cope in an emergency such as a fire? Would they know what to do?
• Do they understand that metal can get very hot to the touch? Do they know that metal should not go in a microwave?
• Do they understand “use by” dates and can they identify if food is bad or dangerous?
• Can they keep their work area safe and mop up spills immediately, especially floor spills?
• Can they follow written instructions such as a recipe?
• Can they cook independently or would they need someone to supervise or help them with certain stages, such as chopping vegetables?
• Are they clumsy and likely to cut or burn themselves?
• Do their sensory needs become overwhelmed when preparing food? For example, with strong smells or high temperatures?
• Do they have the multitasking skills required to do several things at once when cooking?
• Can they keep their attention on the task in hand, or does their mind wander? 
• Can they tell when food is cooked?
• Would they know when to cook a meal, does their hunger signal that it is time to cook or do they need a prompt?

Filling in the Form

When filling in the form, always be accurate and specific and try and include examples if you can. The more detail you include, the better. Try and include real-life incidents. For example, I have a very dear friend who is autistic and one day she was cooking chips and got distracted. She forgot about the chip pan until she could see thick smoke coming from the kitchen. The pan caught fire and damaged part of her kitchen wall. It is useful to be able to include an incident that really happened because then the assessor can understand why a person may need a particular type of aid or supervision when cooking.

Even if you can’t recall an incident, you could try to explain what could happen in certain situations. For example, if my son were to cook unsupervised I know that he wouldn’t think to protect his hands when touching hot objects and would burn himself if unsupervised.

Try to fill the page with as much detail as you can. It may help to write a rough outline on scrap paper before filling the form in ink. Remember, if you think about other examples afterwards, you can add them on another sheet of paper and put them inside the form.

PIP Section 1 Guide

 Before starting this section, I’d recommend reading my introductory PIP guide first, as it gives an overview of the whole PIP application process. Then, when you are ready, you can start the monumental task that is filling in the PIP form. Take a deep breath..we are going in. Let’s start with PIP section 1.

Preparing to Fill in the PIP Form

Make yourself comfortable and aim to complete the form in short sections. This is not a race and breaking it up into manageable amounts is a sanity saver. It can help to have a file or folder containing all of your child’s relevant medical documents and letters. Personally, I never throw away any letters, I file absolutely everything, as I just don’t know when I might need it. Particularly important are letters from doctors and specialists, especially if these have lists of medication and describe the difficulties your child faces with things like practical tasks, social difficulties and communication issues. A current EHCP is also useful.

Separate and copy anything that you want to include as evidence. If some documents are similar, use the most recent one. Then go over any important points with a highlighter to make sure that they stand out. Always use copies when possible, just in case anything gets lost in the post.

Section 1: An Overview

In many ways section 1 of the PIP form is the easiest. It is where we list the health conditions and disabilities that our child is experiencing. Often with Autism, there can be various comorbidities such as ADHD, OCD, Dyslexia and so on. Each of these can be listed separately on the list, along with an approximate time of diagnosis for each.

Below this section, there is an area to list medications. Make sure you list each medication accurately, along with the dosage and frequency, as well as any side effects.

The next part of the form is to list any treatments you are currently having or have planned for the future, both NHS and private. This is where it is handy to have the folder with all the information to hand, as the form requires you to input dates for each treatment. Include therapies such as speech therapy, physio and occupational therapy appointments, as well as sessions with psychologists, paedeatrics and mental health services. Try and be as thorough and as accurate as possible filling all of these sections in.

PIP Section 2

Section 2 expands on section 1 and requires details of the various professionals involved in your child’s care. It’s best to start with your GP details first, especially as they will likely be the person that will be contacted first in relation to your claim. Clearly write the address, phone number and name and repeat this information for any other professionals that you would like to include. These should be people that can give an accurate account of your child’s disabilities if asked.

…and so we come to the end of the first section. Warning, the next part gets harder, but I’m here to hold your hand! This is probably a good time to have a rest and a cup of tea before we move on to the next section…

PIP Application Form Guide For Autism

 When your autistic child turns 16, they will move from DLA to PIP. This can be a hugely daunting task for parents. In this article series, I intend to break the PIP form down into various sections in order to help parents complete it in the best way possible.

What is PIP?

PIP stands for Personal Independence Payment. It is a state benefit for people who cannot do certain tasks independently because of their condition. As autism is a spectrum disorder, not every autistic person needs to claim PIP. For example, if an autistic person is able to cook for themselves, manage money, self-care and transport without any issues, they would be unlikely to qualify for PIP.

Although PIP is for a wide range of disabilities, for the sake of this series I will only be focusing on difficulties faced by autistic people. However, many of the points and suggestions raised will hopefully be useful for a wider variety of people too.

If an autistic child gets DLA (Disability Living Allowance) they will get an invitation before their 16th birthday to apply for PIP. Although some will be able to fill in this form themselves, it is strongly encouraged that they get some help from a parent or advisor when doing so. The reasons for this will become clearer as this article series progresses. Many autistic children will find filling the forms difficult and may not even understand what the forms are about. This is when a parent can apply to be an advocate for the child and fill in the form on their behalf, dealing with all correspondence in their stead.

An Overview of the PIP Form

The PIP application form is a large document and may seem intimidating at first. You should definitely not attempt to fill the whole thing in straight away. It can be a good idea to make notes for each section and then break the form up into manageable segments as it can take upward of 5 hours to complete the whole thing.

The form will come with instructions and it is a good idea to keep these close at hand when filling the form in. It will also be useful to have at hand any paperwork relevant to your case, including doctor’s letters, CAMHS documents and paedeatrician reports. These can be photocopied and added to the form as evidence to back up your claims.

The form is broken down into sections and it is important to consider how your child is affected in each of the following areas:

DAILY LIVING:

• Preparing Food
• Eating and Drinking 
• Managing Medicine and Therapies
• Washing and Bathing
• Toileting
• Dressing
• Reading
• Managing Money
• Socialising
• Talking, Listening and Understanding 

MOBILITY:

• Planning and Following a Route 
• Physical movement
• Leaving Your Home

PIP Points System

Knowledge and understanding the PIP points system is essential to making a successful PIP claim. Each activity is allocated a certain number of points, based on how much help the person needs to perform it. Take cooking for example. If someone needs an aid, such as a stool to help them when preparing food, they may be given 2 points. However, if a person cannot cook a meal safely at all, they would be allocated 8 points. 

The points for the Daily Living component and the Mobility component are separate, and people may get different rates for each. Currently, you get the standard rate for the living component if you score between 8-11 points over the daily living categories. Scores higher than 12 points will receive the enhanced rate.

Likewise with the mobility component, scores between 8-11 will be awarded standard rate and over 12 points is the enhanced rate.

In my following articles, I will be breaking the form down into sections and discussing the best ways to fill them in when considering the needs of an autistic child. I hope that this series helps people with this daunting task.

Shy Bladder

 “Shy Bladder,” is a type of social phobia. Autistic people can find it very distressing when out and about in public places. Let’s learn more about it, what causes it and how it can be treated.

Symptoms of Shy Bladder

A person with Shy Bladder has nothing physically wrong with their urinary tract or bladder. The problem is psychological. It may start at school, where a child could develop a fear of public toilets for any number of reasons. Sometimes children are bullied in school toilets, and that can be a trigger. For boys, it can be distressing and embarrassing to urinate in a public urinal, flanked by other people.

Because of this fear, people with shy bladder may be unable to urinate in public toilets, or even at home if there are others around. In a public toilet, this may because they do not have complete privacy, or they know that other people are in the area or may be waiting outside. They can have a fear of people hearing them urinate, or leaving a smell that others might notice.

An autistic child may have a meltdown due to the distress that this causes, They may really want to relieve themselves, for example on a long car journey break, but may feel physically unable. If their bladder is uncomfortably full, they may feel physical pain sensations which further exacerbate their anxiety. 

The body needs to relax to a certain extent in order for urination to be possible. An anxious person sends signals to their body which prevents the flow of urine.

Treatment For Shy Bladder

Exposure techniques can be useful for treating shy bladder issues. If someone is nervous about using a public toilet, they can take smaller steps to slowly reach this goal.

The most basic therapy would be simple relaxation techniques. These are an important first step to overcoming the anxious feelings that come with urinating in public. It is also important to get checked by a doctor to make sure that the problem is definitely psychological rather than having a physical cause.

Graduated exposure should be taken gently. At first, the person could go to a location where they feel comfortable going to the toilet. This would likely be at home. They could ask a friend or family member to stand outside the door as close at they feel comfortable. The aim would be over time to get the person to come closer and closer to the door.

if the person is nervous about someone hearing them in the toilet, they should gradually try and increase the amount of noise they make, whilst knowing their family member is outside the door listening.

Once they feel comfortable with this, they could try moving on to a public toilet in a quiet place that doesn’t get much footfall. Again, the goal is to use the toilet without anxiety. Once this is accomplished they can gradually visit busier public areas like shopping mall toilets or motorway service stations.

In conclusion, shy bladder can be a very uncomfortable and embarrassing situation for your autistic child, but it can be helped by gradual exposure therapy and if needed, intervention by a professional.

NHS Caring for You and Me Course

 This free carer’s course is run by the NHS. It is designed to help carers to take better care of themselves so that they can balance their responsibilities.

NHS Carer’s Course

A lot of people don’t realise that the NHS runs various free courses. As well as the Carer’s course, they also run sessions about managing diabetes and other long term health conditions. Sadly, because these courses are free, it can be the case that people take them for granted. For example, today’s course had 16 people signed up. Only 8 people arrived. There can be a long waiting list to get on these programs.

The aim of the course is to help carers cope with their many responsibilities. You can’t give from an empty cup. A carer who is happy and balanced will provide better care than one who is tired and stressed.

Introductions and Insights

The course started with the inevitable, “let’s go round the table and introduce ourselves,” but this time with a twist. Rather than just a bland introduction, we had to state some of the challenges we faced as carers. All of us had different backgrounds and circumstances, but had many difficulties in common. Some of the things we listed included feeling isolated, tired and facing challenging behaviour.

Our course leaders then showed us a diagram which illustrated the “stress cycle.” It showed how different stressful situations can have a knock-on effect and create a viscous spiral. The antidote is our carer’s “toolkit,” which we will be examining over the next few weeks.

Practical Help

Introductions over, we looked at some practical ways that we can overcome certain challenges. The first issue we looked at was fatigue. We identified things that can cause fatigue and then thought of different activities and behaviours that can help combat fatigue. We also did some deep breathing exercises, which we can use any time we feel anxious.

Next we looked at challenging behaviours and their effects on both the person and the carer. We analysed different scenarios to try and find the trigger of certain behaviours and ways to mitigate them.

We finished off by setting ourselves an action plan target for next week. This could be exercise or self-care related, but had to be measurable and specific. I set myself the goal of walking for at least 5 minutes every day.

NHS Carer’s Course Conclusion

I enjoyed my first session and found it beneficial. There are 6 sessions in total. I’ll review the whole course once it is finished. I liked the fact that it was informal and interactive. It was run by carers, so it was nice to know that they understood our issues.

People that I know who have completed the course said that it has helped them a lot with their caring role. You can find out more by visiting the NHS course website.

Energy Accounting and Autism

 Energy Accounting is a simple, yet effective method for preventing burnout and feelings of being overwhelmed. Maja Toudal, an autistic psychologist and author, co-created this tool with clinical psychologist Dr Tony Attwood.

The Theory of Energy Accounting

Energy accounting is a bit like managing a budget. We have deposits and we have withdrawals. Ideally, we want to make sure that there is enough in our account to cover any withdrawals that we may make.

Another analogy that a younger child may understand is that of a battery. They will probably know that when they use a device regularly, the battery will drain and get low. To remedy this, we regularly need to charge the battery. But what does all this have to do with autism and meltdowns? Let’s consider how we can apply the theory of Energy Accounting to real-world settings.

Make Two Lists

Start with a sheet of paper and draw a line down the middle. This is your ”energy account.” On one side of the line, think about activities that drain your energy. These could be things like socialising, going to school, shopping, crowded places and homework. Now fill in the other side of the line with things that replenish your energy. These could include reading, video games, massage, going for walks or doing crafts.

Once you have the two lists, you need to assign each item a value in points. For example, socialising at a party might be a huge energy drain, so you might give it 100 points. Homework might be intimidating, but less stressful than socialising so you might only give it 30 points. Do the same for the ”battery charging” activities. Maybe an hour of video games would be worth 50 points or a long walk 70. The points system is unique to each individual.

Balancing the Energy Account

Now comes the hard work of putting it all into practice. Regularly use language with your child that refers to the energy account. Talk about ”recharging” or taking time out for yourself regularly. Write these activities on the chart and see how the energy accounting model impacts on everyday life. Be sure to put plenty of ”deposits” into the account, with plenty of fun and restorative activities to balance out the stressors of each day.

You could even print out a picture of a battery for younger children to fill in so that they become familiar with the activities that decrease and increase their energy reserves.

Many have found this innovative approach useful. I hope that you do too. For more information, I recommend this excellent video from Purple Ella.