CAMHS Frustration: My Experience

As most parents of autistic children know, a diagnosis is not a magic bullet. You are not suddenly entitled to support and help. There is no assurance that everything will be ok. This is just the start of the fight; and plenty of frustration along the way. Today I want to talk about my latest experience with CAMHS and why I feel that everyone involved in my child’s care thinks that his issues are someone else’s responsibility.

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.

Blue Parking Badges for Autism

This week saw some exciting news for the autistic community. Families affected by autism will soon be able to apply for a blue parking badge. This will mean that they can use bays reserved for disabled people. The change is a result of many years of campaigning by autism charities. Authorities and organisations are becoming increasingly aware that not all disabilities are visible. This article will examine the new changes and discuss how to apply for a blue badge.

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.

Autism and Exams

As my daughter is currently in her final week of GCSE’s, it seemed only appropriate to write a special blogpost all about autism and exams. This time of year, teenagers up and down the country are sitting their GCSE and A Level papers. For the autistic child, formal examinations can create a unique set of issues and challenges. It is useful to know what kind of help is available in order to minimise the stress associated with exam season.

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.

Autism and Destructive Behaviour

I don’t like to be negative about autism, but the fact is that autism often comes with certain challenges. Today I want to focus on one of them: destructive behaviour. This type of behaviour can often accompany a meltdown and can be one of the most upsetting and frustrating aspects of living with an autistic child.

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.

World Autism Day 2019

Happy World Autism Day 2019! Today, many people around the world will be doing something to raise autism awareness. Children may be asked to wear odd socks or a certain colour to school. There may be fundraisers to help raise needed money for autism charities. Many autism families choose to celebrate this day as a special holiday.

More Than Awareness Needed

Whilst autism “awareness” is fantastic, what is really needed is autism ACCEPTANCE. Imagine a society that didn’t stigmatise autistic people for being different. A place where differences were celebrated rather than maligned. Wouldn’t it be wonderful if our autistic children could go to school without fear of being bullied for talking or acting the way they do.

World Autism Day 2019 should serve to educate people about autism. Yes, wearing odd socks or a specific colour to school is a talking point, but it’s important to talk about WHY they are doing this. Even the school bully might turn up to school wearing blue to “light it up for autism,” but will it stop them from from bullying the autistic kid in class once the day is over? Let’s have the conversation. Let people know how they can help autistic members of society to feel included.

Ideas For Celebrating World Autism Day 2019

World Autism Day was first designated by the United Nations in 2007, as part of a human rights initiative. Different countries celebrate the day in many creative and unique ways.

“Onesie Wednesday” is one idea, created by the National Autistic Society in 2014. People are encouraged to wear a onesie to school or work to show that being different is ok and acceptable.

Bloggers may write a special post on this day and various social media channels light up with posts and videos about autism.

Fundraisers may include sponsored events or cake sales. Autism charities benefit greatly from the funds raised as it enables them to continue important outreach work in communities, supporting families.

So, however you choose to commemorate this day…

Happy World Autism Day 2019!

Young Minds

Today I wanted to write about an organisation called Young Minds that is doing a very important work. This is not a sponsored post; I’ve actually used their helpline myself and wanted to share with others how helpful it’s been.

Young Minds is a charity that focuses on the mental health of young people. They want all young people to feel supported and empowered, whatever their mental health issues. They listen without judgement and try to offer help and solutions to families affected by all types of mental health problems. This is especially important for the most vulnerable and excluded members of society. The charity also seeks to influence mental health legislation for better outcomes for patients.

Young Minds Parent Helpline

The charity runs a dedicated phone helpline for parents. The line is free to call and is available Monday to Friday 9:30-4. Outside of these times, parents can leave a message via the online contact form and the charity will be in touch as soon as possible.

I’ve used the helpline myself and found the experience incredibly positive. I had concerns about my child and I wasn’t really sure where to go for advice. I called the number and the lady that answered my call was very calming and reassuring. She listened to everything I said and noted it down carefully. I already felt a lot calmer by the end of the call. It felt like a burden shared.

The call handler explained that I would be contacted within a few days by a mental healthcare professional. I did not have to wait long. The following day I received a call from a warm and friendly man who discussed my concerns at length. The call lasted just under an hour and he was able to offer me a lot of practical advice. By the end of the call I had a clear plan in mind of how to get help for my child and things to discuss with the GP. Incidentally, the chat also drew my attention to a condition called PDA, which is a form of autism that I’ll be discussing in a future blog post.

Crisis Line for Young People

As well as supporting parents, Young Minds offers valuable support to young people themselves. Their newest innovation is a Crisis Text Line which they can access during a mental health crisis. All they have to do is text YM to 85258 and Young Minds will reply immediately. The service is free and available 24/7.

I think that a text service like this is invaluable, because it gives support to the most vulnerable members of society and is a lot less intimidating than speaking to someone.

Conclusion

Young Minds are an amazing organisation doing an important job. There are so many young people suffering with mental health issues today. It is good to know that the support is out there and accessible. It’s my hope that this blogpost can help at least one person or family by signposting them in the right direction.

Visit the Young Minds Website for more information or to donate.

Family Fund Blog: Relationships

I have the privilege of writing the occasional post for the wonderful Family Fund Blog. Each month, the blogging team are given a simple theme. We are free to develop the theme in any way we wish, creating a unique perspective on life with a special-needs child.

This month, the Family Fund Blog theme is relationships. When you have a child with autism, relationships with others can be tricky. For example, parents of an autistic child may find themselves under a great deal of stress on a daily basis. So much of their focus is on their child, that it can leave little room for their relationship with one another.

Likewise, friendships can be difficult to maintain. It can be hard to find the time to meet up with friends, as our schedules can be pretty hectic. It can also be hard to find friends that “get it,” unless they have autistic children of their own. The strength of a friendship can be measured by the ability of someone to stick with you through the good times and the bad.


At this point I want to mention some of the lovely people who help to keep me sane on a day to day basis. First of all I have to mention my husband. We’ve been married over 20 years and although our life is anything but normal, we find a good sense of humour really helps! The ability to laugh at everyday situations definitely makes challenges easier to cope with. We also find it important to try and make time for ourselves, even if it’s the odd evening out as a couple.

I have an amazing network of “autism mum friends” who I adore. It’s so good to have people that understand you and who have had similar experiences with their own children. One friend recently bought me a beautiful bunch of flowers to cheer me up when I was feeling low. Such a simple gesture had a powerful effect on me emotionally. True friends are like diamonds.

I also have very supportive parents and the best mother in law in the world. They have been so kind offering practical help as well as emotional support. I sometimes think they deserve a medal for putting up with my moans and groans!

Autism parents mustn’t isolate themselves. It’s so important to have supportive relationships. So remember to say a big thank you to all of the people in your life who are closest to you. Remember to let them know how much they mean to you and never be afraid to tell them that you love them.

Many thanks to Family Fund Blog for providing the theme for this post.

Sensory Processing Disorder: Sensitivity to Touch

In this final part of my series on sensory processing disorder, I will be focusing on sensitivity to touch. This is also known as tactile defensiveness. Every day we are exposed to different textures and temperatures. Problems with the way that the brain processes touch can cause an autistic child to become overwhelmed.

Sense of Touch: Overview

Our sense of touch is controlled by our somatosensory system. This is a network of nerve endings and receptors in our skin. We experience a variety of sensations through touch, including temperature, pressure, texture, vibration and pain.

Because autistic children can experience sensitivity to touch, they may exhibit sensory seeking or avoidant behaviours to compensate.

Sensory Avoiding Behaviours: Tactile

An autistic child may not like to be touched or hugged. It may feel physically unpleasant for them. This may be hard for parents to cope with, as it is natural to want to hug your child.

They may also have an extreme reaction to pain. A slight bruise or cut could cause a huge meltdown that seems out of proportion to the injury itself.

Oversensitivity to fabrics can cause huge problems in everyday life, especially if the child is expected to wear certain clothing for school. Labels and hems can feel itchy and uncomfortable against the skin. A child may also feel hot and refuse to wear a jumper or coat even in cold weather. Some children prefer to wear minimal clothing at home.

Sensory Seeking Tactile Behaviours

Sensory seekers love the feel of different textures on the skin. Their sense of touch can be a powerful learning tool, as they enjoy being “hands on” in their work and play. Parents and caregivers can create a sensory bin for the child to explore. This could be a simple box containing things like rice, sand, dry pasta shapes or play dough for messy play.

Autistic children often enjoy the sense of deep pressure, which can be very calming. This can be achieved using special equipment like weighted blankets. A weighted blanket gives the sensation of being hugged and held. This can help a child to relax and sleep at night.

A sensory seeker may have a high pain threshold and might not even notice that they are injured. It is important that caregivers help them to understand the signs of an injury so that they can seek medical help if needed.

Helping Children with Sensitivity to Touch

There are many ways to offer help to a child with tactile defensive behaviour. A sensory seeking child may enjoy having a “fidget toy” to carry with them when they go out. This will satisfy their need for tactile stimulation and potentially prevent meltdowns.

As I mentioned earlier in the article, special equipment like weighted blankets and sensory toys can be useful tools for autistic children. Likewise there are also specialist clothing stores that sell “sensory friendly” clothes. This could include school uniform made from soft fabric, or clothing without scratchy hems. Parents can also remove any scratchy labels from clothing to make it comfortable. Autistic children may also like soft towels or bedding.

When it comes to hugs or displays of affection, parents need to discuss boundaries with their child. Maybe they could agree on an expression of affection that the child feels happy with. Parents can also warn school staff, friends and family members that the child has sensitivity to touch. It is also important to help the child if they are in a situation where they need to be touched. For example if they need to go to the doctor, parents could explain what will happen before they go.

Conclusion:

I hope you have enjoyed my series on sensory processing disorder. If you haven’t read the other articles in the series, please feel free to explore my posts on visual, hearing, taste and smell sensitivity.



Sensory Processing Disorder: Sensitivity to Smell

Today I will be focusing on heightened sensitivity to smell and its possible impact on everyday life for autistic people. We have already looked at three senses affected by sensory processing disorder: sight, hearing and taste. A person with SPD perceives stimuli in a different way to others. This can result in either seeking or avoiding behaviours.

Every day, we are bombarded with a variety of different scents. Many are pleasant; others not so much. For an autistic person, this can cause a great deal of discomfort. An unpleasant or strong smell may trigger meltdown behaviour.

Sense of Smell: Overview

The sense of smell is closely linked to the sense of taste. We have special cells, located high in our noses that detect scents. These cells link to the brain. When an olfactory sensory neuron detects a smell, it sends a message to the brain. The brain interprets the data at receives and recognises it as a particular smell. Scents can also affect our emotions and stimulate memories.

Our sense of smell has two very different purposes. One is related to enjoyment; the scent of flowers, perfume, or delicious food cooking. Our sense of smell also functions as a powerful warning system. For example, we might detect a fire from the smell of burning. Likewise we would not eat a food if it smelled bad, as this would indicate spoilage.

Sensory Avoiding Behaviours: Olfactory

For some autistic children, certain scents are unbearable. My son hates strong food smells like vinegar and cheese. He was bullied by children at school who would deliberately put these foods near him to get an extreme reaction. Children who dislike strong odours may be picky eaters and refuse many foods because of their sensitivity to smell.

Smells in the environment can also be a big problem. My son will loudly protest if we visit a house or building that he considers “smelly.” This can be embarrassing when visiting someone’s home! It can be good to put ourselves in the child’s position. It is unpleasant for us if we are in a room that smells bad. Imagine how much worse it must be for a child with autism. They may often respond by trying to get away from the source of the smell. They may get very agitated and upset.

Olfactory Sensory Seeking Behaviours

On the other end of the spectrum, there are children who love strong smells and seek them out. They may even be attracted to particularly unpleasant odours like feces. This could result in dangerous behaviours, as such children may seek out substances like gasoline, which are harmful to inhale.

On a positive note, parents may be able to use fragrances in a useful way. If a child is agitated, a pleasant or familiar scent may be very calming and relaxing to them.

Helping Children with Sensitivity to Smell

Whether the child has seeking or avoidant behaviours, there are ways to help. It’s good to be aware of how a child may react in a different environment and make plans accordingly.

Some parents have had success introducing new scents to their child in small increments. This could help desensitise them to a certain smell.

Others have used scents as therapy. There are scented putties available which can be used as stress relief toys. Pleasant scents can distract a child from a bad smell. For example, if a family are visiting a zoo, they may anticipate some bad smells! Therefore, they could take along a small cotton wool ball or tissue with a few drops of essential oil. The child can use the pleasant fragrance as a distraction to cover any unpleasant smells. Certain oils like lavender are very relaxing.

It can also be good to make an “escape plan” and think of ways that you can physically remove a child from a situation if they are becoming emotional.

As individuals we should be considerate of those around us. It is not kind of us to wear very strong fragrances. This could actually be overwhelming to others and cause discomfort.

As with other sensory processing issues, it is best to consult a professional for advice about the best methods for helping your child. An occupational therapist may advise on a “sensory diet,” which is a series of exercises to help children with SPD.

Sensory Processing Disorder: Taste

The sense of taste is going to be the third part of my series on Sensory Processing Disorder. As we have seen in the previous two posts about visual and auditory processing problems, children with autism can have significant issues in everyday scenarios. This is due to the way that the brain deals with the information that it receives.

As the sense of taste relates to food, it is reasonable to conclude that a disturbance in processing taste can cause problems. Getting a balanced and healthy diet can be hard, and social situations difficult. Sensory processing issues related to taste can require creative solutions to overcome successfully.

Sense of Taste: A General Overview

The sense of taste is also known as gustation or gustatory perception. It is closely related to the sense of smell. The five main categories of taste have been identified as: sweet, sour, bitter, salty and umami. As well as these main tastes, the way we perceive our food can also be affected by the texture of the food. It can also matter how hot or cold it is.

A person with sensory processing taste issues may struggle to distinguish flavours from one another. As with other SPD types, we see both sensory avoiding and sensory seeking behaviours regarding food.

Food: Sensory Avoiding Behaviours

For some with sensory taste processing issues, certain flavours may be overwhelming. This may cause them to gag or to even vomit when eating a food that they don’t like. They may be extremely picky eaters, preferring very bland foods or limited foods from a certain category. It can be difficult for a child with SPD to get a balanced diet containing all of the necessary nutrients from the main food groups. In very extreme scenarios, a child may only wish to eat one particular type of food.

Another problem that may occur with SPD is that a child may not like certain foods on a plate to touch or mix together. A parent or caregiver may need to divide elements of a meal into separate plates to avoid them touching or contaminating one another.

Temperature can also play a big part in whether a child may accept a certain food. They may only like it served at room temperature and dislike hot food. Likewise, a child may try and avoid foods with certain textures, such as lumps.

Food: Sensory Seeking Behaviours

The opposite is true of a child with sensory seeking behaviour. They might love strongly-flavoured foods or hot and spicy dishes. They may also drool and dribble excessively. Such a child may also crave foods that are inedible and potentially dangerous, such as stones, dirt or feces. This is known as pica.

Some children also seek out general oral stimulation by chewing objects or clothing because they like the sensation.

Help for Children with Gustatory Processing Issues

Food should be made as appealing and as easy to manage as possible. This will depend on the preference of the child. Parents could try cutting food into small chunks or presenting it in a novel or creative way.

Friends and family should try and set a good example for by showing how enjoyable a varied diet can be. They should offer plenty of praise for trying out new foods. This can really encourage a child with sensory processing taste issues.

It can be a good idea to let a child help out in the preparation of a meal, so that they can associate food with enjoyment. They may be more willing to try something that they have made themselves.

For a child seeking oral stimulation, there are a variety of sensory toys available, including chewable jewellery. This will enable them to satisfy their need to chew without being destructive.

An occupation therapist or dietician may also be able to help with further suggestions on how to enable a child to eat a varied and balanced diet.

In my next blogpost in the series, I’m looking at the sense of smell and it’s associated sensory seeking and avoidant behaviours.