Our Experience Applying for a Blue Badge For Autism

 

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 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.

“Autistic” vs “Has Autism”

 What’s in a name? A lot it would seem. Especially when referring to a community of people. A community has the right to decide how they want people to refer to them. Therefore the debate about whether to refer to someone as “autistic” or to say they “have autism” is relevant.

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.

Negative Flashbacks and Autism

 Autistic people can have powerful memories. This can result in intense flashbacks, which can be painful and embarrassing. In this post I am going to discuss the phenomena of negative flashbacks and their effects.

Autism and Memory

Autistic people can experience memories in a very different way to neurotypicals. As a spectrum condition, experience of memory can vary greatly between individuals. Autobiographical memories can be particularly intense for one autistic person, whereas another may have difficulty remembering the details of events where they were present. They may not be able to accurately picture themselves in a scenario that they participated in.

There are many different kinds of memory. These include declarative, sensory, episodic and working memory types. Autism can affect how these memories are experienced. As an extreme example, an autistic savant may be able to recall tiny details of an artwork or play a piece of complex music from memory. Memory and autism is a huge topic, which hopefully I can return to in more detail in later blogs. However, this post is dedicated to the specific topic of negative flashbacks.

Negative Flashbacks

A negative flashback is when an autistic person has a very strong memory of something that happened in the past. This will usually be an embarrassing incident of a social nature, although it could be a distressing event, like bullying. Unlike a normal memory, this type of memory is extremely intense, almost transporting the person back to the time and place over and over again. They feel the emotions and pain over and over, which is extremely unsettling and frightening.

A negative flashback can be combined with rumination. This is when a person plays a scene over and over again in a loop. It is like a stuck record on replay. The scenario replays endlessly in the head, causing great distress. This rumination, combined with the intensity of the emotions involved, can easily lead to a meltdown.

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Supporting Someone Through a Negative Flashback

It is important to take the individual into consideration when supporting them through a flashback episode. Firstly it is important to take things seriously. An episode like this can cause intense distress for the sufferer and should not be taken lightly. It is no good telling them to “snap out of it,” as it really is not that simple. Emotional episodes such as this can actually cause physical pain, like chest or stomach pains. Show empathy and kindness. Show that you understand and do not belittle their suffering.

Depending on the individual, distraction can be a good technique. If possible try and talk to the person about different things to draw the focus away from the painful memory. Likewise, grounding and mindfulness techniques can help to ground the person in the here and now, rather then then getting lost in a painful memory. Apps like Clear Fear can help with this.

It may also help to try to address the memory when they are in a calmer state. By talking about it in a calm way, they may be able to minimise some of the more distressing aspects of the memory and see it for what it really is. It is important for them to know that a memory is just a memory and cannot hurt them if they do not give it the power to do so. This may take time. 

Negative Flashbacks: More Information

For further information and a first-hand experience of negative flashbacks from an autistic individual, I recommend reading Dan Coulter’s blog. Dan explains how he would be triggered by sights or sounds which would cause his flashbacks.

Dan also mentions in his blog that it may be necessary to get professional help for someone suffering from negative flashbacks.

Sunflower Lanyards

 Today I wanted to write about something that I found out about recently; Sunflower Lanyards. I didn’t know anything about the lanyard or the scheme, but some of my friends who have children with autism had tried it out with success. Since then, I’ve seen the scheme advertised in my local supermarket, so was keen to find out more.

About the Sunflower Lanyard Scheme

The scheme was first launched at Gatwick airport in 2016, when staff wanted extra help recognising those with hidden disabilities in order to offer tailored assistance. The sunflower lanyard is a subtle and dignified way to meet this need. The sunflower symbol itself indicates positivity, cheerfulness and strength.

Anyone with a hidden disability, regardless of age, can wear the sunflower lanyard. The scheme recognises that many of us have disabilities or illnesses that aren’t immediately apparent to others. This could include things like autism, hearing problems, dementia or mental health issues; to name just a few. By wearing the lanyard, a person is letting staff know that they may need extra time or assistance; or just some patience and understanding.

How to get a Sunflower Lanyard

The lanyards are free of charge and available from the customer service desk of participating supermarkets. I like the fact that no proof of disability needs to be shown in order to get one, as this means that those currently undergoing diagnosis are not excluded. A lanyard can be worn by the disabled person or their carer.

As the scheme becomes more popular, more places will recognise and accept the sunflower lanyards and understand what they mean. Hopefully this will also result in staff receiving appropriate training in order to accommodate the needs of visitors with hidden disabilities.

I think the sunflower lanyards are a fantastic idea and hope that families like mine affected by autism, anxiety and other hidden conditions are able to make good use of this new and exciting resource.

Calm Harm and Clear Fear Apps

 Please note that I am not affiliated with the creators of Calm Harm and Clear Fear. This is NOT a sponsored post. I’m just sharing our experience in the hope that it will help someone.

Apps for Anxiety

We were introduced to the idea of using apps for anxiety at our last CAMHS appointment. My autistic son has a problem with ruminating thoughts and often gets agitated. Our counsellor recommended several apps that could help. Out of the list, Calm Harm and Clear Fear were our favourites.

Downloading the apps is simple. They are available on both the Google Play store and the Apple App Store. We prefer using our tablet as it is more user friendly. However, having them on a phone can be useful as they are always available to hand.

Calm Harm and Clear fear can both be used for anxiety, but both focus on different things. You may prefer one over the other, so it’s worth trying both. They are free to download and use.

Calm Harm

I will start with a brief overview of the Calm Harm app. This app has been created with teenagers in mind who may be suffering from the urge to self harm. It has been created by the mental health charity stem4. 

The app describes the urge to self harm as a wave. This wave can pass and we can “ride the wave” using different techniques. The main methods are comfort, distract, express yourself, release, random and breathe. Different techniques will appeal to different people.

Each section of the app presents the user with a selection of timed activities, designed to help the urge pass. For example, you may have to name an animal for each letter of the alphabet, or count the 19 times table. This is called Dialectical Behaviour Therapy (DBT).

Calm Harm then lets the user record and monitor any changes by creating a log. Hopefully, the person will feel more in control of their emotions by using the app regularly.

Clear Fear

The Clear Fear app is slightly different and may appeal to younger children. Nevertheless, it can be used by any age.

The app looks at the different types of anxiety that we can feel, including social anxiety, phobias and OCD. It used mindfulness techniques and breathing exercises to help the user calm down.

One activity that I really enjoy on the Clear Fear app is the video clip section. You are presented with a short video, such as a beach or forest, and encouraged to spot as many small details as you can. This is a distraction technique which allows the user to become absorbed in the activity, hopefully making them feel less anxious.

Our Experience Using Calm Harm and Clear Fear

We have found both apps helpful and continue to use them daily. Now, when my son gets upset or angry, I encourage him to use the apps. He says that he feels a lot happier and calmer when using them.

I will mention one slight problem we had with the Calm Harm activities. Because some are timed, my son felt under a lot of pressure to complete the activity in the allotted time; increasing his anxiety. Because of this, I make sure he doesn’t do the activities that make him feel this way. I also told him that it doesn’t matter about doing the whole activity in the time, but some autistic people may feel compelled to. Therefore some caution is needed.

I have recommended both apps to friends and people seem impressed with them. They can be used by anyone, not just teenagers.

You can read more about Calm Harm here and Clear Fear here.

PIzza Massage for Anxiety

 I recently attended a seminar about children with anxiety. We learned some excellent techniques for helping reduce anxiety in our children. One of the methods that really stuck in my mind was pizza massage. It is a really simple anxiety relief method that you can do anywhere. The steps are simple to remember; as long as you know how to make a pizza…

Preparing Your Child

Depending on your child, you may wish to talk them through the steps of the massage before beginning. There are some videos on YouTube that can be useful in this regard. It’s also important that they are ok with the idea of you touching and rubbing their back. Some autistic children love massage, whereas others don’t like to be touched. Ask permission or consent from the child.

The Steps of Pizza Massage

Let the fun begin! We start by kneading the dough. We do this by imagining that the child’s back is the dough. Let’s squish and press the skin gently, just like kneading real dough. Do this for a minute or two to relax the child and unknot those tense muscles.

Next we roll out the dough. We make gentle rolling motions down the back as if we were rolling dough out onto a worktop. Furthermore, there are different ways of doing this. We could use a wooden massage roller or a ball. In addition, we could make a fist and rub it down the back in straight lines.

The third step is to spread the sauce. Make a flat palm and rub it smoothly over the back as if you were spreading tomato sauce over a pizza. Make smooth, as well as sweeping motions.

Now we add the toppings. We could ask the child which toppings they’d like! Try making gentle tapping and patting motions over the surface of the back as we sprinkle all of the imaginary toppings on our pizza.

It’s time to put our pizza in the oven. Rub your hands together and blow on them to create warmth and then place them on the child’s back. Another way we could improvise this step is to get a heat pad or an item that has been on the radiator or in the tumble dryer. Rubbing it gently over the back creates a pleasant sensory experience.

The final step in pizza massage is to chop the pizza. Use your hand to make gently chopping motions over the child’s back. Now your pizza is done!

Benefits of Pizza Massage

Pizza massage is great for autistic children who are sensory seekers. Moreover, this tactile method is good for anxiety relief as it provides distraction and sensory input. It also helps to strengthen the parent-child bond. It’s a method that is very easy to remember and doesn’t require any special equipment.

So go on! Give it a go today. It’s very relaxing and fun. Maybe you could treat yourselves to a real pizza once you are done!

Max Card

 This is NOT a sponsored post. I just wanted to write about a service that I’ve found incredibly useful over the past few years and I wanted to share my experiences with others. Today’s blog is all about the wonderful Max Card.

Discovering the Max Card

As a parent of an autistic child, I think it is important to avail yourself of the help and provisions that are available to you. Because of this, I registered my child on the local council disability register shortly after diagnosis. This gives us access to things like Short Breaks and the latest information about services and support.

A few years back, I received one such email; detailing an exciting provision for disadvantaged children. The Max Card is available to foster families and families with additional needs. It enables users to get a discounted admission to many attractions in the UK.

How to Get a Max Card

Max cards are provided by different charities and local authorities around the UK. They may not be available in all areas. However, it is easy to check on the website whether one is available where you live. In our case, our local carer’s centre were giving out the cards. I just popped in and gave my details and payed a small admin fee of a couple of pounds. It was as simple as that! The lady gave me my card to use straight away.

The card is valid for two years but it is very simple to renew. I just popped back into the centre with my old card and got a new one when it expired.

Where Can You Go With a Max Card?

There are LOTS of attractions in the UK participating in the scheme, including the major theme parks. Discounts vary depending on the attraction. A theme park like Alton Towers will typically offer 50% off admission to Max Card holders. Simply enter your card number on the website and you will be taken to a special page with the discounted rates.

At other places, you simply show your card at the gate to access the benefits. For example, at our local crazy golf, we got a free carer ticket. Other attractions include swimming pools, trampoline parks, experience days and pottery making. There is something for everyone.

Max Card in Summary

My family has saved a lot of money on days out using our Max Card and that it why I wanted to tell others about it. It really is a fantastic scheme. Families can use the card until their child reaches the age of 25. The website has a handy list of all the attractions covered by the scheme. You can find the ones near you by putting your postcode in the search bar on the Max Card website.