Family Resources

Communication booklet

I am Feeling Chart

Going out communication cards

A comic strip explaining autism

Welcome to our world book

Early signs of being autistic

The picture has several Autistic traits that might indicate your child might be autistic.  Please remember a child may have one or two Autistic traits but doesn't actually mean they are Autistic.  Also, depending on your child's age they might be developing at a slower rate than their peers but will catch up with support and time.  However, if you feel that your child might be Autistic, trust your gut and get support and advice.  

So, what do you do if you think your child might be Autistic?  If they are still under the care of their health visitor ask them to send a referral to the relevant professionals.  In North Lanarkshire your child will be referred to the Neurodevelopmental Team.  Unfortunately the waiting list is extremely long and it will be some time before you are seen.  So, it is worth getting your referral in quickly as the wait is so long.  You might need other referrals including audiology, occupational therapy and speech and language therapy, depending on the needs of your child.  Again, unfortunately the waiting list for speech and language therapy can be several months and over a year for some areas.  Lanarkshire have a helpline and information on social media to help support your child while you wait (Click the red link).  Many of the strategies you'll find in my communication booklet above, free to download.

Let's talk about sleep

• No screen time or stimulating games for 1 hour before bed. (Gasps all Autistic parents!) This one isn't easy and to be honest we found it too difficult to follow but every family is different and you might find it helpful.
• Try to put your child to bed at the same time every night and wake them (if they haven't woken you already at crazy o'clock!) at the same time in the morning. This helps the body clock recognise you do certain things at certain times.
• Make the room a calm, relaxing environment with no gadgets or TVs in the room, with as little distractions as possible. No busy walls or toys out. Make the room dark and a comfortable temperature. If your child needs a night light, try not to have a bright light on. 
• Maybe have a bath or shower before bed. (This might not be a good idea if your child hates the bath, washing hair, getting dressed etc) You want it to be a calming experience. 
• Read a story in bed.
• Whatever routine is best for your child, keep it consistent so your child knows bedtime is coming.

2. Help your child to be active during the day so they are more tired come bedtime. This is not a sure fire way to get your child to sleep but I found the days where my son wasn't active he definitely didn't sleep. 

3. Lots of exposure to natural light during the day helps with the circadian rhythm for sleeping and waking.

4. Visuals can help your child to understand what is happening. You can make a social story of the sleep routine and read that before the routine starts. I put a sign for sleepy time at my son's bed and then showed it to him when I wanted him to sleep. Then switched it to the awake or time to get up sign in the morning. 

5. What's on the bed can make a difference. Some children like compression so weighted blankets or lycra sheets can help. My youngest child hates having any blanket or duvet cover on him even while sleeping. So we have to put extra layers of clothes on him to keep him warm through the night. My oldest child was exactly the same but now he's older, he likes the duvet. Tents that go over the bed can help your child feel safe and secure in a snug environment. My middle son loved his dream tent. 

6. Keep a sleep diary to see if there are any patterns of how your child sleeps and why. This didn't work for my eldest son, as he didn't have any pattern to his sleep. Well, not one we could work out. But your child might and you might find a wee gem of information that helps your child to sleep.

7. Contact Sleep Action (formerly Sleep Scotland). They can help with establishing a good sleep routine and sleep hygiene. 

8. Melatonin is a natural hormone produced in our bodies relating to darkness and helps us sleep. Melatonin can be prescribed from a paediatrician to help your child sleep. Like most parents I didn't like the thought of giving my young child medication to make him sleep so I waited until he was at school before I tried it. I thought maybe sessions at nursery would tire him out...nope. Then I thought surely full days at school would make him sleep...nope! So, after 5 long years of very little sleep I was desperate. I tried it (I cried the first few nights of giving it to him). It took a little while to adjust the dosage of medication to get it right, under the care of the paediatrician but we got there and got some sleep! Unfortunately, it didn't last long and he needed to be switched to the slow release melatonin because the quick release melatonin only helps to get your child to sleep. My son was still waking too early (2 am!). Slow release helps my son but as he got older I've needed to adjust the dosage and put his bed time later and later. Now, my son is on the maximum dosage and some nights he's still up at 4 am for the day but some nights he sleeps through. I'm extremely thankful for those nights. Remember to seek advice from paediatrician about melatonin and follow their guidance throughout. 

So, sleep for many Autistic children is complicated but I hope this is useful to you. If you have more specific questions please feel free to email me. info@autismattheheart.co.uk

The Dreaded toilet training!

Six months after this my family and I joined a charity for Autistic children and we met the most wonderful people, who gave us loads of advice and book recommendations to help with various issues including toilet training.  With this advice and months of research into Autism I tried again with my son.  I deluded myself into thinking that I have learned so much and I’m following an Autistic approach that has worked with Autistic children, that it would simply work with my son.  No, it didn’t but there was a slight improvement.  This was how it continued every summer holiday, small improvements, until my son was nearly eight years old, when he successfully was toilet trained.  I was so proud of my son that summer, as I am everyday.  It had been such a long battle and such a difficult concept for my son to learn but he did it!!!  I believe each year he learned a little bit and gained confidence that it built up slowly to success.

So, below is what I have learned about toilet training through my two Autistic sons that are successfully toilet trained:

• Observe your child before you start to see if:
  • Your child has any toileting routine e.g. time of day or length of time after food or drink.
  • Your child has any awareness of toileting? E.g. going to a private area to toilet in their nappy, sit in a certain way or changes to their facial expressions.
• Set aside a block of days that you don’t need to leave the house during the day, so your sole focus is on toilet training.
• Use visuals to help your child understand the toilet process, use the language that you would normally use with your child so it’s natural and consistent. If your child uses specific images at a school or nursery e.g. Boardmaker, use the same images and you can ask the school or nursery to provide them for you.  That way it is consistent in the different environments they are in.  Below is an example of the steps in the process:
  • Pull down trousers/pull up skirt
  • Pull down underwear
  • Sit on toilet
  • Do the toilet
  • Wipe
  • Pull up underwear
  • Pull up trousers/pull down skirt
  • Wash hands with soap
  • Rinse hands with water
  • Dry hands
  • Well done!
• Potty or toilet? I would advise you to go straight to the toilet and not use a potty.  I think it is confusing for autistic children to learn to use a potty and then have to relearn to use the toilet.  It also saves a step.  Plus many autistic children might not toilet train until they are older than your average neurotypical child so potties will be too small.
• Ensure your child feels safe and secure on the toilet by checking if their feet can touch the ground and if the toilet seat is not too big that they fear falling in. Using toilet seat inserts is very useful, especially in the beginning.  Try to find one with a step (if child can’t touch the ground with their feet while sitting on the toilet seat) and handles so the child can get on and off independently, their feet sit on the step and they feel secure.
• Make the bathroom/toilet a welcoming and interesting place for your child to be in. For example, if your child doesn’t like strong smells don’t use air freshener in there.  Also make sure the temperature is comfortable and it is easily accessible to your child.
• To help my son stay and sit on the toilet I decorated the walls with pictures of all his favourite TV and movie characters, so he felt happy and enjoyed being in there. It was a bit strange for visitors to our house but most people loved it!
• Consider the soap you use, your child might not like the type of soap you use. Think, do they prefer liquid or bars of soap?  Non scented soaps?

There are different strategies to toilet training and every child is different.  So, if you try one strategy and it doesn’t work, try another one.  Think about how your child learns best and see if there is a strategy like that.  Below is the strategy that worked for my children:

1. Have your child not have any clothes or underwear on the bottom half of their body.
2. Watch your child closely and when they start to toilet, run with them to the toilet.
3. If your child gets even the smallest amount in the toilet, give them huge praise and a reward. (A reward is something tangible that the child can have e.g. a toy, food, TV programme, book, sticker etc.  But remember you hope to give this out several times a day, so not a whole bag of chocolate!)
4. If your child didn’t manage to get any in the toilet, no reward but don’t give any negative feedback. Remember this is an extremely difficult process for them.
5. Continue like this until your child starts making their way to the toilet, not having any accidents, several times in a row.
6. Then try putting pants on your child. This can confuse your child into thinking they have their nappy back on and can result in more accidents.  If that happens, go back to the start.  If your child manages, start to reduce the rewards.
7. When your child can manage the toilet with pants on, put their trousers/skirt on and see how they cope with that. You are still helping them remove clothes to get onto the toilet, this stage is about getting them to go to the toilet.  If they start having accidents again, go back to just their pants.
8. Next step is to manage going to the toilet in a toilet not in your house. Try to go to a place that your child is familiar with e.g. grandparents house or another relative they are close to. 
9. Now, try toilets when you are out in public and the educational setting they are in e.g. school or nursery.
10. Now, your child is toilet trained during the day. Night time can be a separate issue that takes more time for children to master.  Be patient, some children will need their nappy/pad overnight for longer.  When your child starts to be dry overnight, try without the pad and see how it goes.

If toilet training is not working and your child shows no awareness of the toilet or if they don’t care if they are sitting in it, maybe they are not ready.  I strongly believe that no matter what strategy you use, if a child is not ready they will not manage to toilet train.  Remember to be kind to yourselves, it is a difficult process and many Autistic children don’t toilet train until they are a little older. Good Luck!

Books that helped me a lot with this process:

(Click the red links to see it on Amazon.co.uk)

Help when your Autistic child won't eat and other food issues

I’m sure I’m not the only parent of Autistic children to get upset or frustrated about what they will or won’t eat. At the moment I make spaghetti pasta with the same sauce every single night for one child, super noodles for another and plain egg noodles for my oldest! It is exhausting and worrying just trying to feed them enough to sustain them and to help them grow. Not to mention worrying about their fluid intake. Your child’s difficulties eating can have an effect on the whole family as it can restrict when/where you can eat out, social events and meal times can be stressful.  

A few of the issues my children have had with eating are:

• Sensory issues with food
• Not understanding or getting the feelings of full or hunger
• Fear of trying new foods (Food Neophobia)
• Over eating and not eating enough
• Being over weight
• Being under weight
• Stress or anxiety putting them off their food

I have learned different strategies on how to help my children eat but some days it’s still a struggle. Below is what I’ve learned (advice and suggestions are at the end) but please note I am not a health professional and if you are concerned at all about your child’s health, growth or eating issues please contact a health professional for medical advice and support. The first call would be to your GP or Health Visitor depending on the age of your child.

Sensory Issues

Autistic people can have different sensory experiences to neurotypical people. This can mean being hyposensitive and/or hypersensitive to their senses. With food this can mean the sight, smell, taste or feeling of foods can be enough to make an autistic child (and adults) refuse it. As an Autistic adult if a food doesn’t smell nice to me I won’t even let it touch my lips to taste it, I will just refuse to eat it. How foods look are important too. My older two children will eat chicken nuggets but they must be Birds Eye and cooked exactly 7 minutes in the air fryer. If they have any dark brown (“burnt” to my children but cooked to most other people) bits they will not eat them. So, visually they must look perfect. Many Autistic children will have expectations on their food being consistent, for example, fruit can change it’s texture depending on how ripe it is. But chicken nuggets (if cooked identically every time) will be the same.

Not understanding or getting the feelings of full or hunger

My oldest son would always over eat and then feel sick or have a sore stomach. We had to limit his food and stop him over eating. He simply couldn’t tell if he was full. Understanding these feelings is

called interoception – the sense of what is happening in your body. The diagram below is by Dr Megan Anna Neff (Neurodivergent Insights) and it explains interoception brilliantly. Click the link below for more.

For many Autistic children interoception awareness is difficult. Something else to consider that might be affecting your child.

Food Neophobia

Food neophobia is the fear of trying new foods and this can have a major impact on the child’s diet. It usually presents around the age of 18-24 months. Dr Elizabeth Shea is a clinical psychologist and on the National Autistic Society’s website, she states:  

“Neophobia (fear of the new) is a typical stage in the development of food acceptance whereby children reject foods if they haven’t seen others eat them first.”  

Supporting autistic people with eating difficulties (autism.org.uk - click the link below)

This fear usually reduces as the child gets around the age of 5 years old but this often doesn’t happen with Autistic children. It can last much longer for some. Neophobia can also be changes in packaging, appearance of food, different brands or styles of the same food. For example, chicken nuggets that are breaded not battered and different shape or size.  

Cognitive Issues:

Desire for everything being the same

Many Autistic children need routine and for life to be predictable, to help them feel safe and secure. This can include food. They want their food to be exactly the same so they understand what is happening in their world at that time. This can also include cutlery, plates and cups. Having these items the same can help the child to know the food is safe.

Anxiety

Stress and anxiety can put some children (and adults) off their food. My son can get so anxious and upset he simply can’t eat anything. Fear of what will happen if they eat something can also have a huge impact. Some children might worry that the food might make them sick or they might choke on it. These are real fears. My son remembered that he has been sick in a certain month of the year, so during that month he tries to eat very little to stop him from vomiting. He ended up starving, light headed and nearly fainted during that month this year. This all started because he had a terrible sickness bug the year before.  

Many children, neurotypical and Autistic do not like their foods touching or mixing together. And they are little detectives that certainly sense if you have put in extra vegetables in a food (even blended!). It can be a gamble because if they do realise what’s happening they might not trust that food again or trust that you haven’t done it to other foods.

Weight

One of my children was overweight and then become underweight. He struggled to understand the feeling of full as described above but now is eating less and less. It’s a constant battle to help him be healthy. We have seen dieticians and the main message when they are underweight is to make sure they are eating enough calories to maintain growth. So, if they will only eat super noodles and chicken nuggets – that’s ok for the moment but seek advice from a medical professional. Then when he was overweight we made healthy switches (where we could and if he accepted them) e.g. full fat milk to semi skimmed milk, plain biscuits instead of chocolate ones, healthier pasta sauces etc.  

Weight is not the only health issue that can result from poor diets, my poor son struggles with constipation and needs medication to help him. Again speak to a health professional to get the help you need.

• Use the Eat Well Guide to make a list of the safe foods your child will eat. (The Eatwell Guide - www.gov.uk) This is a plate that is separated into sections e.g. carbohydrates, protein, dairy etc. (Suitable from 2 years old) It can then be used to make a weekly menu for your child. Encourage your child to be involved in the choosing of meals to help them have some choice and control over their eating. (Idea given to me by a fantastic dietician)                       
• Download a blank plate to write or draw safe foods for your child. Click the download button below.                                       
• Twinkl have a great resource for the eat well guide plate. At the moment it’s a free download. Click the link below: 

• Don’t put pressure on your child to eat e.g. “You must eat that before you can leave the table.” I really do understand how frustrating it is to make meals that your child continuously doesn’t eat and I understand how worrying it is when they won’t eat. But despite this, making meal times a fight won’t help anyone.
• Try to make meal times as relaxing and calm as possible. (Some days this will be a real challenge!)  
• Where possible, encourage your child to help with the preparation of food (snacks and meals).
• Give your child their safe food then offer them something new but take it in small steps. So, see if they will tolerate in the room, then on the table, a plate next to theirs and then on their plate. Remember to build it up slowly.  
• Let your child see you eat, so try to eat when they are eating. So, you can be a positive role model.  
• Keep a food diary to see if there are any patterns in food refusals, eating well etc. Click download button below.
• Give your child a multivitamin (if they will take one).
• Use social stories to help your child understand what is happening at meal times or to introduce new foods. Below is a link to a social story on YouTube but you could make up your own to personalise it specifically to your child.  

• If your child is really anxious at meal times, try relaxation techniques before the meal. Online you can find loads of techniques but click the links below for Mayo Clinic's and Sheffield Children's NHS documents that are really helpful.                                                                       
• The 5 Things technique (see the Sheffield Children’s NHS pdf) is what helps my son the most to calm down and be grounded in the present moment.
• The article, 'Children with neurodevelopmental difficulties who avoid or refuse food' - Resource Library - Sheffield Children's NHS Foundation Trust (link below), is about issues some Autistic children have with eating. However, please note I do not agree with the use of the term ASD (Autism Spectrum Disorder) or how they categorise being Autistic as a neurodevelopmental disorder. I believe being Autistic is a different neurotype. Despite that issue, the ideas to support your child to eat are useful. Ideas including:                    

Give your child advance notice that the meal is nearly ready                                                 

Is your child able to sit comfortably?                 

Distraction techniques e.g. TV, Ipad, book etc   

Messy food play

Have a ‘Food of the Week’ to help the child to adjust gradually to new foods (remember to still serve their safe foods though)

• For more from this article please click the link below: 
  
  

Caregiver's Quick Guide

I know it can be really difficult or near impossible to get a babysitter or caregiver that can give your child all the care and love that they need.  Below is a document that you can complete to make a quick summary of your child's favourite things and helpful tips for when someone else is taking care of them.  I have one for my child on my living room wall so the caregiver can quickly glance at helpful tips when required.  There is also a space for emergency contact and the local doctors contact details (just in case!  Hopefully not required.)  One document is blank so you can fill it in and the other has some suggestions.  Download for free.

Autistic burnout - Signs and Recovery

It is believed that up to 80% of autistic people will experience burnout at some point in their lives.  Autistic burnout can be extremely debilitating and needs the appropriate support to recover from.

What is autistic burnout?
‘Autistic burnout is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life.’ It is also described as ‘a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.’
‘Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew’’:
Defining Autistic Burnout.

In other words, autistic burnout is when the demands on the person are higher than what that person can cope with, which leads to exhaustion, loss of function and the reduced capacity to cope with different areas of life.

Signs of autistic burnout
• Extreme exhaustion
• Increased sensitivity to sensory stimulus
• Reduction of skills such as memory, focus, emotional regulation, impulse control etc
• Increasing meltdowns and shutdowns
• Mental health deterioration
• Burnout can appear similar to clinical depression, but it’s not depression
• No energy to mask
• Reduction of school, work or social events attendance
• Reduced self care
• Extreme demand avoidance
• Restricted eating
• Issues with sleep

Causes of burnout
The causes of autistic burnout can generally fall into two main categories: stressful life events/activities/circumstances and the lack of support and accommodations for autistic people. Here are a few examples:

• Environments not being inclusive and accommodating for autistic people e.g. extreme lighting, no quiet areas, no alternative methods of communication etc
• Masking
• Not getting the support required due to lack of empathy and understanding
• Co-occurring conditions (e.g. mental health conditions, learning disability, sleep disorders) or multiple neurodivergence (e.g. AuDHD, PDAuDHD, dyslexia)
• Expectations become higher than the capacity of the person
• Stressful circumstances e.g. life changes, bereavement etc
• Lack of self advocacy skills e.g. to say no, ask for help, taking breaks etc
• Sensory overload
• Monotropism – is a way of thinking, where people tend to focus intensely on a small number of things at a time. Many autistic people can be monotropic thinkers and it can lead to special interests.

Can kids burnout?
Yes, absolutely kids can burnout too. It is more recognised and researched in autistic adults but it can happen with children. It may present in cases of school avoidance.

How can you recover from burnout?
Recovery can look different from person to person but the main idea is to do things that relax you, that interest you, try to reduce demands of you and get as much rest as you can. NHS Leicestershire Partnership has a brilliant diagram that shows strategies to recover, see below (click on the red link for more):

How can you reduce the chance of it happening again?
To reduce the chance of going through burnout again you need to continue the self care that was developed in recovery. Try to recognise and avoid triggers of burnout, where possible. Strive to spot the warning signs that burnout is approaching and put measures in place to reduce demands, reduce stress and rest where possible.

Remember autistic burnout is real and it’s serious. Please listen to the individual who maybe going through it and support them in their recovery.  If you are concerned about an individual please contact a medical professional for further advice.

Sources - Click on red links for more information

Social Stories

Social stories can help prepare autistic children for changes to routine, explain difficult situations and safety rules.

Below are two social stories to help children return to nursery and school after Christmas. Click on the download button to get the free pdf resource.