My name is Jo, and I am a Pathological Demand Avoidant autistic. My husband is also autistic, and we have an autistic toddler with Global Development Delay.
If you are at the beginning of the autism diagnosis journey with your child, I have been there. I have jumped through all of the procedural hoops, fought all of the fights to get my son what he needs, and most notably, I am autistic myself.
It’s great that you are researching and looking for guidance on how to understand and support your child. Raising a child is hard when you have the same neurological wiring… it’s incredibly hard when you don’t.
If you are at the beginning of the journey, I expect that you are going through a wide range of emotions, feeling totally out of your depth, and having fear-of-the-unknown thrown into the mix for good measure. That is a completely normal reaction. But the more guidance and support that you get, the more confident you will be in supporting and helping your child in the best way that he or she needs.
Most importantly, YOU ARE NOT ALONE. It can be a very isolating experience, especially in play groups, but there are thousands upon thousands of parents going through the same thing that you are.
So, here are twenty tips to help you on your journey:
1. Like neurotypical children (non-autistic), autistic children are all different.
The spectrum is not a line where you can mark where your child sits on it. It is more like the image shown below.
Your child may have dots anywhere within each section so you can see that there is no way of measuring autism in a straight, parallel line where you can mark it and see where your child sits on it; it just doesn't work that way.
Some things that work with one autistic child won’t work with others – you will need to experiment with what works and what doesn’t with your child.
2. Talk to and learn from autistic adults.
They are generally more-than-happy to answer any questions you may have.
Many neurotypical (NT) parents of autistic kids feel that the autistic adults are nowhere near as severe or impaired as their children, so those autistic adults couldn’t possibly understand their family’s struggles.
The truth? We WERE those children. The difference between autistic children and autistic adults is that we’ve had years of practice with masking, self-regulation, social interactions, and how to manage our limitations– autistic children haven’t had that practice or necessary experience. Just because autistics don’t meet NT developmental milestones at the same pace doesn’t mean they’ll never get there.
Autistic adults are a gold mine of knowledge on different tactics, things to try, things to avoid, etc. Mostly, though, they have first-hand knowledge on how autistic children’s brains work.
3. Accept your children for who they are. COMPLETELY.
Your child is different and has been given the gift of seeing and experiencing the world differently. No, it’s not all sunshine and rainbows-– every gift is balanced out with a measure of hardship and impairment; but, trust me, if your children receive the love, understanding, support, and guidance tailored to their needs, they will thrive.
Famous autistics include Einstein, Issac Newton, Mozart, da Vinci, Bill Gates, Steve Jobs, Picasso, Bach, Melville, Tesla, Twain, and Anthony Hopkins. I could list off a lot more, but you get my point. Many of the aforementioned trailblazers had severe struggles.
4. Don’t try to change them.
They are a square peg in a round-peg world. No amount of pushing or turning will make them a round peg.
5. Fight, fight, FIGHT for the right support, therapies, diagnoses, and school placement for your child.
The government in the UK does not budget enough for autistic supports/diagnostics, so you need to be prepared to fight for what your child needs. I hear in the US, the availability for quality supports varies from neighbourhood to neighbourhood.
You know your child better than anyone in the world. Don’t be afraid to question doctors or specialists-– they are getting a snap shot image of your child, whereas you live with them 24-7. Trust your instincts, and feel proud of yourself for doing the hard work of advocacy. It’s thankless, but well worth it for your child.
6. Manage their sensory needs.
One of the main struggles for autistics is managing sensory issues– both hypersensitivities and hyposensitivities.
There are 8 different senses: sight, hearing, smell, taste, touch, vestibular, interoceptive, and proprioceptive. You may not know much about the last three on the list, but they are very important senses when it comes to the autistic sensory profile.
Autistics can suffer with something called sensory overwhelm which is often caused by experiencing too much of one type of sensory input faster than the brain can process or filter it. This can cause panic, anxiety, and a fight-or-flight response which can display as violence. It’s important to note, though, that most autistic people are not violent.
It is possible to tell when someone is reaching the point of overwhelm– this is the time to either remove the offending stimulus or remove the person/child from that environment before overwhelm occurs.
Autistics can also be hypo-sensitive to sensory stimuli which means that they may actively seek out sensory input. This is known as sensory seeking.
Sensory seeking children may be clumsy, have great difficulty in sitting still, enjoy bouncing off of furniture or trampolines, and enjoy chewing on clothing or items.
7. If your child has sensory issues, find a good occupational therapist specialized in sensory management.
An occupational therapist with the right background can not only help your child by providing the stimuli they need to regulate their sensory systems, but they can also teach you how to recognise your child’s signals that they are over- or under-stimulated.
They can also tailor a sensory diet that you can provide your child at home. When a child is regulated, they are calmer, happier kids who are far more likely to be able to sit still, interact, and concentrate.
8. Give extra time for processing.
Autistic brains process information differently from their NT counterparts. Some can process information very quickly and can therefore react or respond at incredible speed whereas some process information very slowly and take longer to react or respond.
This means, in layman’s terms, that when you ask someone with slower auditory processing speed to do something, it takes longer to understand what has been heard and then more time to work out how to respond to it or what to do to comply with the request.
For the person making the request, this can be quite frustrating and they often make the same request using different words to ensure the question has been understood. The problem here is that, when you make the request using different words, their brains have to start processing this new sentence all over again. So, by asking again differently, you are doubling the processing time. They can become frustrated with too much information and lash out or feel assaulted.
The tip here is, if your child has a slow processing speed, give them extra time to process. If you ask a question or make a request, wait for their response. They are often not ignoring you, they are processing what you have said to them.
This also applies to activities such as trying to leave the house with your child– give extra time for them to process what they need to do: put on shoes, put on coat, pack a backpack, etc. Having slower processing speed does not reflect on intellectual abilities at all.
9. Non-verbal children can hear and understand more than you think.
A common misconception of non-verbal children is that, if they don’t communicate with words, they can’t understand words either. Many non-verbal children understand words and conversations long before they can talk and may go on to be prolific writers or even speakers.
Don’t presume your non-verbal child can’t understand what is being said around them. Be careful of what you say, as talking negatively about how their struggles affect you or others within their earshot will still affect their self-esteem and self-worth.
10. Adapt your parenting style to suit your child’s needs.
Before you become a parent, you have an ideal in your head of what kind of parent you are going to be, what your child will and will not be allowed to do, what boundaries will be set, or the places you will frequent with your child.
When you have an autistic child, you need to throw that ideal out the window and adapt your parenting style to fit what your child needs.
Child-led parenting works very well with autistic children as they will indicate to you what they can’t tolerate or what they enjoy doing– these things may be totally different to what you expect them to be. Listen to them.
11. Let them stim!
Stimming is short for self-stimulatory behaviour. Whether it’s arm flapping, rocking, squeaking, fiddling– let your child stim. Whether you find it embarrassing or unusual, stimming actually serves a sophisticated purpose for your child. It brings joy, self-regulation, and calm– why stop that?
By shaming this behaviour or stopping them from stimming, you can cause them anxiety, frustration, and unease.
12. Don’t shout
I’m guilty of shouting when I have reached the end of my tether and my frustration is through the roof; but you will find, as I have, that shouting at an autistic child does not achieve the response that you are hoping for. You will generally either be totally ignored or you will cause a great deal of anxiety and potentially a fight-or-flight response in your child.
In short, don’t shout– it has absolutely no positive outcomes other than venting your own frustrations. Find a healthier way to release those feelings. I find screaming into a sink full of water to be very therapeutic!
13. Know when to push and when to back down.
Where sensory sensitivities and overwhelm are concerned, your child will have good days and bad days. It was explained to me like this: overwhelm is like a bottle of cola. Every time you experience anxiety/sensory difficulties the bottle is shaken. After it has been shaken enough times, the lid blows off and overwhelm erupts.
Some days when your child wakes up, the cola is still and calm in the bottle. Some days your child wakes and it is like the bottle has been shaken several times already. The tip here is to learn to read the signs that your child’s internal pressure is high or near the eruption point.
You can push your child to do more when their mood is better and their tension lower. Pushing them when they’re already overwhelmed feels traumatic and abusive to them. Learn when to push and when to back down with your child. It will reduce meltdowns and overwhelm explosions.
14. Encourage their passion/special interests.
I cannot express how much joy is experienced when an autistic is indulging in their passion or special interest. Whether you think it isn’t age-appropriate (a teenager watching kids TV or a five year old interested in quantum physics), or if it’s something that you think is weird (the history of sewing machines or the evolution of the light bulb), encourage it.
Chris Packham is a great example of how a special interest can turn into a very profitable and long career. His special interest is insects and animals. He has now been the insect and animal expert on many programmes over the years and loves his job.
15. STEER CLEAR OF ABA THERAPY.
This tip is in capitals because it is so incredibly important. ABA is a behavioural therapy that essentially tells your autistic child that there is something wrong or broken in them and that they need to pretend to be like everyone else in order to fit in or to be considered a functional member of society. It is widely despised by the autistic community.
If you are in the US, you’ll get pressure from doctors, schools, and other professionals to enroll your child in ABA. Please don’t put your child through this. Adults who have gone through ABA experience higher incidence of PTSD.
16. Find good support groups for you and members of your family.
There is no doubt that NT families who have an autistic child can struggle with the strain of their child’s impairments and needs. If your social circle or usual support network does not have any autistics in it or have any experience with autistics, then a good support group for you or any member of your family is especially helpful.
There are a great deal of different Autism Support Groups on Facebook; some helpful, some awful. You’ll need to try out different ones until you find some that you are happy with, but I cannot define how helpful talking to other people in the same situation will help you and relieve some of your anxiety and stress.
There are also different support groups offline where you can take your child who also have fun days and outings for siblings of autistic children. Definitely worth checking for any in your area.
Everyone needs support in their lives at some point. With the marvels of technology, you can find a wealth of support online to help you through the bad days.
17. Understand demand avoidance.
All autistics experience a degree of demand avoidance. This can be perceived as the child being deliberately difficult or stubborn, but in reality, you are asking them to do something and their brain has hit a brick wall. They simply can’t follow the demand.
This is not intentional and they have very little control over it. There are different ways to get around demand avoidance– offering choices is a very effective way as then the demand is turned into a choice that is easier to accept.
There are many conditions which are associated with or highly-correlated with autism, like Sensory Processing Disorder, ADHD, and Pathological Demand Avoidance. Among other individual attributes, having demand avoidance to an extreme, pathological degree (as the name states) is the defining impairment.
Getting frustrated at them will not make them overcome the demand avoidance; it will just make it worse. It can feel important to “break” the willfulness of the child so that they are able to comply with school and, later, work demands.
But, this trait often becomes a passionate driver for leadership and leads to powerful advocacy for self-industry, social justice, and personal autonomy. It’s better to empower this trait and encourage making wise decisions and provide options than to attempt to punish and shame the child into compliance.
18. Work with the food aversions and sensitivities.
It is very common for autistics to have some amount of food aversion. This can be caused by a sensory difficulty (texture, taste, smell), whether the food is dry or wet or even by the colour of the food. In some instances, the autistic child cannot tell you why they cannot eat something. For me, it’s broken eggs (where the yolk is broken and mixes with the white). I simply cannot eat a broken egg and if the yolk splits in the frying pan, then it goes into the bin, and I start again. I have no idea why this is.
The important thing here is to accept that your child cannot eat specific foods that they are adverse to and try to slowly introduce other foods into their diet.
Under no circumstances should you ever force-feed your child or shame them for not eating the food that you have given them. All this will achieve is creating an issue with food in general and foster a great deal of anxiety for your child. Later, food-associated trauma can manifest as life-threatening eating disorders.
19. Tell your extended family your child’s autistic with confidence and positivity.
This can be a very anxious time for you as well as your child.
Choose when and whom you want to know and make notes of the important points that you want to raise. It is very easy for your memory to fail you during an important conversation.
The main thing here is to be positive. Your child needs you to be their advocate and that starts in the home and with extended family. There are many positives to being autistic. Do not focus on the impairments that your child may also have.
Older generations will likely have a different viewpoint of autism, and you need to be prepared to answer any questions they may have. Be prepared for the “don’t accept labels” conversation.
20. Love your child.
This may be the most important tip of them all. Even if you don’t understand him or her yet, just love your child. So many autistic children have low self-esteem and low self-worth because they don’t feel loved or accepted for who they are. But, like your child, too.
The difference it makes in the confidence and self-worth of the child is immeasurable. Take it from someone who knows.
So there you have it! Your 20 top tips on how to raise your autistic child.
I hope that you have gleamed something useful along the way here and that you continue to research and learn as much as you can for your child.
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