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 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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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.

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.

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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.

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Today’s blogpost is something special. I was asked by family fund to write a piece for National Anti-Bullying Week 2019. It runs from 11th-15th November. Bullying can be a particular problem for autistic children, as they can be “easy targets,” standing out as different from their peers. Furthermore, they may have behavioural quirks, sensory issues, or struggle to understand social cues.


Thankfully, as a family, we haven’t had a lot of experience with bullying; my son is at a good special school which deals with incidents very quickly. However, when he was at primary school he did have some problems. It was a mainstream school and he found it hard to fit in. I’d like to share some snapshots from my previous blog to show how difficult school days could be:


“…things came to a head yesterday. He said that the boy had twisted a paperclip open and had been trying to stab him with it. He also said that the boy had picked his nose and tried to wipe it on my son’s top. When my son goes into the corridor to get his coat, the bully blocks his way.”


“Yesterday, My son said that the bullying had started again. The boy had been taunting my son with a bag of Monster Munch (snacks with a very strong flavour and scent). Kids with autism are hypersensitive to smells, and the smell of Monster Munch makes my son feel sick. When the boy realized this, he kept putting the bag near his face and then eventually threw the bag of snacks in my son’s face. Of course, my son did not think to mention any of this to a staff member.


In the playground, my son plays by himself. He is happy in his own world. During break, a kid kicked a football in my son’s face. He said it was an accident, but the child involved was a child who had been previously bullying him.”


Or course, these incidents also affected me as a mum:


“He was pretty miserable about going in today. I had to fight back the tears when I sent him in…felt like I was sending him to his doom. I’m in tears typing this.”

One of the big problems we had was that my son wouldn’t think to report these incidents or tell me about them. Therefore I’m aware that there were probably many other incidents of bullying that I never knew about.


Having an autistic child in the family caused another type of bullying too. One day I went to the school to watch the children singing in a concert. My oldest son was sitting in the middle row with all of the other children enthusiastically singing around him. However, my son wasn’t singing. He was crying. In the audience, I felt helpless. I didn’t know what was the matter. I didn’t know how to help him. After school, I asked him why he’d been upset and couldn’t sing. He explained that just as the concert had started, the boy behind him laughed and whispered in his ear “Your brother is disabled.”


From the stories that I’ve shared, it’s easy to see how bullying can affect each member of the family. Moreover, my examples aren’t even extreme. Imagine how tough it must be for those who experience physical beatings, cruel cyber bullying and death threats.


The theme of Anti-Bullying week 2019 is “Change Starts With Us.” It emphasises how we can all work together to stop bullying. We have a collective responsibility to do something and to speak out. Change starts with us…

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At the moment, there are three main avenues for support for my child: School, Paediatrician and CAMHS. Each one loves to push the responsibility onto the other, creating a triangle of frustration. Let’s consider each one in turn.

The Paediatrician

The Paediatrician is an elusive creature and getting an appointment to see her is akin to one of those 1980’s fantasy movies involving some sort of impossible quest. She is always out on call, so I leave messages with her secretary, never to be returned.

In the rare instance that I did manage to speak to her, she promised me an appointment on 7th September. This never materialised, as she is a very busy lady. However, she did let me know that I’d be much better off speaking to CAMHS as they’d be able to deal with my enquiry quicker. At this point in time I’m still waiting for the Paediatrician to get back to me with an appointment.

This brings us to….

CAMHS

Anyone who has ever tried to get an appointment with CAMHS will tell you that it’s a waiting game. We did manage to get an initial assessment, only to be told that we’d be seen in 8-9 weeks. It is now 9 weeks and CAMHS have told us that there’s no chance of us being seen any time soon because they are very busy.

However, they did chat with me on the phone and made it clear that they don’t deal with autism issues and if my child’s problems were because of his autism then they wouldn’t see him. They also told me that I should speak to the PAEDIATRICIAN as she could prescribe something to help him, but also to speak to the SCHOOL as most of his issues were due to school anxiety.

So let’s call the….

School

School were very lovely and friendly. They noted down my concerns. They told be to call CAMHS immediately to get him put higher on the list and also to speak to the PAEDIATRICIAN. I guess that brings me full circle then.

As you can see, each department tries to direct the frustrated parent to another department, whilst denying that they are doing exactly that. Heaven forbid that the departments should actually try talking to each other and sharing information. I’m not at all surprised that children slip through the net and end up harming themselves. The system is completely broken and not fit for purpose.

NICE Guideline 170

I found a fantastic article at It Must Be Mum explaining that of CAMHS refuse to treat a child with autism, they are going against NICE guidelines. NICE guideline 170 states that:

“The following recommendations have been identified as priorities for implementation.  Access to health and social care services:

Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.“

Surely if CAMHS refuse to see a child based on their autism, parents could try quoting this to access help.

I’d love to know about your experiences with CAMHS and the school system. Please share your thoughts in the comments section below.

The post CAMHS Frustration: My Experience appeared first on My Autistic Child.

How Can Autistic People Qualify for a Blue Badge?

It is important to note that not autistic people want, or need, a blue parking badge. However, for many families, the new changes will make a huge difference to their quality of life. For example, a family with a severely autistic child may currently be unable to leave the house if their child has a poor sense of danger, or is prone to unpredictable meltdowns. Some autistic children will bolt and run away, causing danger to themselves and road users alike. Children with autism may also be prone to destructive behaviour.

For the reasons outlined above, we can see why the new changes have been made. Currently, a family affected by autism can apply for a blue badge if they:

1: Cannot take a journey without risk of serious harm or psychological distress.

2: Have 10 points on the PIP mobility component if planning and making a journey causes significant distress.

How to Apply for a Blue Badge for Autism

The new rules will come into effect from the 30 August 2019. From this date, families will be able to apply online for a blue badge under the new criteria. The website is https://www.gov.uk/apply-blue-badge.

The National Autistic Society also have some useful advice about the application process for a blue badge on their website. It also has some real-life stories that show how families will benefit from having a blue badge.

New Blue Badge Rules Help Autistic Families

The new rules are overwhelmingly positive and will give families affected by autism a new lease of freedom. Individuals with autism, as well as those affected by anxiety, OCD or dementia will also benefit. It is encouraging to see how small changes like these can make a big difference for autistic children and their carers.

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Does My Autistic Child Need/Want to Take Exams?

The first point to address is whether taking exams is in the child’s best interest. Autism, being a spectrum condition, affects people in any number of ways. This will affect their ability to perform in an examination scenario. Schools should treat each child as an individual. Will an exam cause unnecessary stress? Is the child capable of doing the work needed in order to pass the exam? Are they able to understand what is expected of them?

In some cases autistic children are not able or ready to do a GCSE. However, there are many entry-level qualification options available to choose from that may be more suitable. Also, an autistic child may excel in more practical subjects. In that case a vocational course may be more appropriate than an academic one.

When deciding what qualifications to take, it is important to consider the interests and strengths of the child. What subjects are they strong in? What does the child want to do as a career? Are they considering a university path? These questions are important when considering which exams to take.

Autism and Exams: Access Arrangements

Schools are able to make special arrangements for autistic pupils taking exams. Again, the needs of the child must be considered. How does their autism affect them in an exam scenario? For example, a child with sensory issues may have problems sitting in an exam hall with other pupils. The sounds of people tapping their feet, pens on paper, coughs and sneezes, may be extremely distracting and uncomfortable. A child with autism may also have fine motor problems, which means that they cannot write as quickly as other children, which would be a great disadvantage in a timed exam.

Access arrangements may include placing a child in a smaller, quieter room to take the exam, so that there are less distractions. Autistic children may also be given extra time to complete their work or allowed access to a laptop or computer so that they can type their answers rather than write them. They may be allowed a reader and/or a scribe during the exam.

It is important to contact the school as soon as possible to put access arrangements in place. These often need to be arranged months in advance with the cooperation of the exam board involved.

Autism and Exams: In Summary

Autistic children are definitely capable of sitting exams and qualifications are more accessible than ever. Schools are making it easier for autistic children by being more inclusive. Autism needn’t be a barrier to academic achievement.

Here’s wishing everyone taking exams every success this year. Keep overcoming challenges and persevering. Hopefully, your hard work will be reflected in your grades in a few months time. And also don’t forget the amazing teachers, parents and support staff who help our autistic children to be the best that they can be.

For more information, the National Autistic Society has a useful webpage on exam guidance.

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Broken Things

Our house has had its fair share of broken things. Generally, it tends to be gaming controllers. The controller is often seen as the cause of frustrations during gameplay, hence it will end up being bitten, thrown up a wall or pushed into a dustbin. However, we’ve also had our fair share of other “casualties.” Our walls are a bit dented and scratched in places. We have five dining chairs instead of a set of six. We are on our fourth broken TV set.

I read an excellent article by another autism parent, showing that we are not alone. I felt an instant cameraderie with the writer of the article, as though we were members of an exclusive club; the brotherhood of dented walls. But how can destructive behaviour be managed? And how do autistic people comprehend the destruction that they create?

Autism and Perception of Destructive Behaviour

I can’t speak for every case, but I think for a lot of autistic people there is an inability to cope with the aftermath of a destructive rampage. The child has calmed down, so therefore expects everything to return to normal as it was before the meltdown. Consequences simply don’t occur to them. “I was angry. I threw the game controller up the wall. But I’m calm now and it still doesn’t work.”

As parents we can make a big mistake in trying to shield our children from the natural consequences of their actions. We fear that they will never cope with the broken controller, so rush out and buy a new one. The child learns that there are no real consequences. The magic fairy has come along and fixed everything. Calm has been restored. For now.

But the truth is, that by shielding the child, we are actually exacerbating the problem. Broken things stay broken and that lesson needs to be learned. It’s a hard one for parents. We are conditioned to want to make everything right. But long term, this doesn’t do us or our kids any favours.

Autism and Destructive Behaviour: Natural Consequences

So I now let the broken things stay broken. Games have to be played on a TV with a less than perfect display. The thick streak of solid deodorant smeared down the bedroom wall has not been magically cleaned away. Broken games consoles remain unplayable. Living with the consequences of destructive behaviour may cause a child to think twice about doing it again.

As well as this, it’s a good idea to introduce more immediate consequences, tailored to the particular child. In our case, any destructive behaviour results in an immediate ban of all electronic games for the rest of the day. A favourite game may be put in “game jail,” only to be released after a full day of good behaviour from the child. These methods haven’t prevented every single meltdown or destructive episode, but they have helped.

I’d be really interested to hear how others reading the blog have coped with negative Behaviours. Please feel free to share your parenting strategies in the comment box below.

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