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 score ten 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.

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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.

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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…

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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.

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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.

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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.

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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.

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Parking and Tickets

Unlike some of the larger theme parks, which have huge car parks, Flamingo Land has quite a user-friendly car park. Everything is in easy reach of the gates. Car parking is free and there are designated Blue Badge spaces right by the entrance. Even though we have a Blue Badge, we decided not to use it as everything was a short walk away.

It is best to book tickets online. Carers get in free and it is easy to add this to your booking. Just be sure to bring any evidence with you to the theme park. DLA or PIP letters will be accepted. Remember to bring photographic evidence to accompany it.

Access Pass

Flamingo Land has an access pass system for those who cannot stand in queues. Autistic people may find it very distressing to stand in a queue because of the noise and crowds. They may also find waiting very difficult and uncomfortable.

To get an access pass and band, just head to the First Aid office just as you go into the park. The staff are very helpful and friendly and you can show them your disability evidence documentation. Again, be sure to include photographic proof that the person on the document is the same as the person applying for the pass.

You will then be issued with a pass, as seen in the image above. The disabled person will be designated one carer, who will wear a wristband. Unlike some other theme parks, which allow multiple family members to ride together, Flamingo Land only allows one.

Using the Accessibility Pass

To be fair, the queues are quite short for most rides in the park, and in most instances we found that we didn’t need the pass. However, for some of the more popular rides, the queue pass was invaluable.

The rider goes to the disability gate, usually the exit of the ride, and shows their pass and wristband. The ride operator will then allow them onto the ride but will also mark their card with a time that they can next use it. This is a form of ”virtual queue.” For example, if a ride queue is 45 minutes, the rider will not be able to use the pass again for the same length of time. This is in fairness to the other park guests. It saves the disabled person from having to stand in an uncomfortable queue and during that time they can either ride one of the smaller rides, or do a different activity.

There are 9 spaces on the card, but it you fill them up, you can get a new card from the office. We didn’t use all of the spaces in our card.

Other Accessibility Information

Flamingo Land also has a number of facilities to help disabled people to have an enjoyable day out. There are disabled changing facilities, which are accessible by RADAR key. Wheelchairs are free to loan with a non-monetary deposit such as a driving license or passport.

Some areas of the park can get very loud, so I’d also recommend breaking the day up by going to the zoo area, which is quiet and peaceful of things get too much.

If your autistic child loves days out like this one, I’d recommend reading my article about the Max Card, which has many discounts and perks for autistic families.

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The Application Process

The initial application process was relatively easy. Everything is online and the form allows you to create save points so that you can take a break and return without having to complete the whole thing in one go.

The hardest part about filling in the online application is submitting the relevant documentation. As I mentioned in the previous blogpost, not all autistic people will qualify for a blue badge. However, if autism causes a child considerable distress when travelling or they could pose a danger to others, then it’s definitely worth applying for a blue badge. To this end, the documentation supplied with the application must reflect the criteria. It’s important to keep hold of any doctor’s letters, psychological reports and other evidence to upload to the application. These MUST relate to the criteria in some way. It’s no use just sending a copy of a letter with an autism diagnosis on it. The letter must specifically state how the child has difficulty that would require special provision to be made when travelling. For example, if your child has a history of running away or a poor sense of danger, this would be excellent evidence to submit with your form.

Our Personal Experience Applying for a Blue Badge

I spent a while filling the form in and uploaded as much evidence as I could, including parts of the EHCP, paediatrician letters and CAMHS reports. I thought it was enough. However, the next stage made me realise that any application for a blue badge on the grounds of autism would require a certain amount of hoop-jumping.

A few weeks after filling in the online form, I received a paper form in the post saying that they needed more specific evidence. Ah, the catch. I had provided excellent evidence, but they wanted more, and they were going to make it as difficult for me as possible.

A professional would need to fill in the form. It was geared towards health professionals but school staff can fill it in too if they know the child. The form goes into more detail about how the child’s condition affects them and focuses on the criteria such as intense psychological distress when travelling and danger to others. The person filling in the form needs to provide proof that the child fits the criteria.

Finding Someone to Complete the Blue Badge Form

Unfortunately, our application coincided with the outbreak of COVID. Schools shut down and all medical appointments were online or telephone only. There was no opportunity to physically give the form to anyone to fill in. In addition, those I did ask were unable to help. For example, our CAMHS psychologist was my first port of call. She claimed to be happy to fill in the form and would have been the perfect person to help. However, her supervisor advised her that she would be unable to fill it in as she only worked with my son in blocks rather than long term. She handed the form back and apologised.

The paedeatrics department was equally unhelpful. Our paediatrician was on maternity leave and was replaced with a locum. She didn’t know my son well enough to fill in the form. I put the form on the notice board at home and waited.

Months passed and school opened again. Thankfully, my son’s teacher was willing to fill the form in. He wrote a detailed description of my son’s anxiety issues and related everything to the relevant criteria. It was a masterpiece! However, all of the delays meant that I sent the completed form back almost a year after they had initially sent it.

More Obstacles

I had concerns about sending the form in so late, but there was no deadline given in the letter. I thought it would be best to call them up just in case. Tentatively, I called the blue badge department and was put on hold. After half an hour I gave up. I decided to send the form anyway and hope for the best.

Unsurprisingly, my claim was refused. They told me I should have returned the form within 6 months and that now I’d have to start a new application. At this point I actually considered giving up. A blue badge seemed so far out of reach. Somehow, that seemed a huge waste. I gathered my mental strength, opened up the online form and proceeded to go through the whole process again, painstakingly uploading all of the evidence from before and adding the new form that the teacher had filled in.

Finally, Success!

I have to admit, I wasn’t hopeful. So imagine my shock when the application was approved! We now have a blue badge. It seems to be a victory, not just for us, but for other families with autistic children too.

We are careful to use the badge in a considerate way. We don’t abuse it. In fact, most of the time we don’t need to use it at all and would prefer to keep disabled spaces clear for people with greater need. However, there are times when the badge is going to be incredibly useful, especially when visiting places with big car parks, like the NEC, or theme parks. The walk from these car parks to the attraction itself can be 15-20 minutes, or via shuttle bus, which can cause huge distress to my son, who has no sense of danger and has bolted on large car parks with no regard for his own safety or that of others. Hopefully, that will become less frequent now we have our blue badge.

To conclude, I’d definitely recommend applying for a blue badge if your child struggles with anxiety or meltdowns related to car travel. The process is not easy, but the results can be well worth it. My advice is to find lots of corroborating evidence and to get a supportive professional on board that will help you. It seems ironic that the things that are supposed to make out lives easier, are so hard to obtain. If you are currently going through the blue badge process, I wish you every success. Together, we can be the catalyst for policy change.

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A Realization

When I first created this website and was considering domain names, I wanted something that was easy to find. “My Child Has Autism” seemed an obvious choice. It did what it said on the tin. There was no ambiguity about it. Therefore I never assumed that there was anything wrong with the title of my page. But the more time I spent with the autistic community, the more I learned that many people place a great importance on how we refer to autism.

Interestingly, I’d made a similar mistake with a previous website. I’d referred to autism as ASD, which was the term that the medical profession used when diagnosing my child. However, upon talking with members of the autistic community, I learned that ASD can be considered a derogatory term, as the “D” stands for “disorder.” Nowadays the medical profession tends to use the term ASC or “Autism Spectrum Condition” when referring to autism.

So…”Autistic” or “Has Autism?”

My opinions started to change when I saw how autistic people themselves felt about these labels. Most do not see themselves as separate from their autism. It is a part of who they are. If we see a blind person, we do not say they “have blindness.” Likewise we wouldn’t say an English person “has English.” Many autistic people feel the same way and do not like autism do be described the same way as when we “have a cold” or “have flu.” A useful list of appropriate terms can be found on the National Autistic Society website.

The term “have autism” is called a person first reference. There are people who like this approach. They argue that an autism diagnosis doesn’t define a person. They do not wish to label that person. On the other hand, the term “autistic” is an identity first reference. A person who prefers to be called autistic is proud of their identity and who they are. They do not see it as something terrible that deserves to be pushed to the end of a sentence.

In a recent survey, autistic people were asked which term they preferred. Over half said that they preferred “autistic.” Eleven percent used the term “has autism.” The rest were happy to use either.

Moving Forward

The best thing to do if you are unsure is ASK. Ask the person which terms they prefer to use. Many prefer “on the spectrum” as a kind of middle ground. It should also be said that the terms “high functioning” and “low functioning” can be highly offensive to the autistic community, as can the term “Asperger’s.” It’s really important to use terms that people feel comfortable with and that don’t make them feel like secondary citizens. Also as a parent of a child with autism, I’ve learned that it’s not considered appropriate to call ourselves “autism moms” or “autism parents” unless we ourselves are autistic.

With these points in mind, I’ve decided to change the title of this website to “My Autistic Child” out of respect for the autistic community. Unfortunately I’m unable to change the URL at present. Let’s keep these conversations going and continue to show respect and recognition for the feelings of others,

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