20 Top Tips to Raising an Autistic Child
My name is Jo and I am a Pathological Demand Avoidance Autistic. My husband is also autistic and we have an autistic toddler with Global Development Delay.
You are probably asking yourself; why should I listen to this woman who I’ve never heard of and I don’t know from Adam?
The answer is simple; if you are the beginning of the autistic diagnosis journey with your child – I have been there. I have various qualifications in Autism, child care training, with my own child I have jumped through all of the procedural hoops, fought all of the fights to get him what he needs and, most importantly; 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, feel totally out of your depth and have 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 they need.
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.
Ok, here we go;
Like neurotypical children (children whose neurological wiring is typical of
the general population) 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 below.
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.
I hear an awful lot on Autism Support Groups from NT parents (neurotypical) of autistic kids that say that the autistic adults on the group are nowhere near as severe or impaired as their child so they couldn’t possibly understand what they or their children are going through.
The truth? We WERE those children. The difference between the autistic children and autistic adults is that we’ve had years of practice with masking, self-regulation, social interactions, how to manage our limitations – autistic children haven’t had that practice or necessary experience.
Autistic adults are a gold mine of knowledge on different tactics that help; things to try, things to avoid and, most importantly, they have first-hand knowledge on how autistic children’s brains work.
3. Accept your child 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 child receives the love, understanding, support and guidance, they could change the world.
Famous autistics include; Einstein, Issac Neuton, Mozart, Leonardo De Vinci, Bill Gates, Steve Jobs and Anthony Hopkins. I could list off a lot more, but you get my point.
4. Food Aversion
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. Some instances the autistic 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 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 create a great deal of anxiety for your child.
5. Fight, fight, FIGHT for the right support, therapies, diagnosis and school for your child
The government (UK) does not give a decent budget to autistic support/diagnostics so you need to be prepared to fight for what your child needs. 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-
Trust your instincts. I swear to you that it is worth it and will help your child no end.
6. Sensory Needs
A big part of the struggles that autistics face is sensory issues; both hypersensitivities and hyposensitivities.
There are 8 different senses; sight, hearing, smell, taste, touch, vestibular, proprioceptive and interoceptive. You may not know much about the last three on the list but they are very important senses.
The vestibular system is found in the inner ear and tells us if we are moving or if we are stationary, if we are moving it tells us what direction we are moving in and how fast. It is also responsible for our balance and awareness of gravity.
If you have a heightened sensitivity to vestibular senses, then you may have a fear of movement that involves swinging or any activity where your feet are off the floor. You may be more clumsy and move more slowly.
If you have a hyposensitivity to the vestibular sense, you may be constantly moving fast; unable to sit still which would affect sitting in class.
The proprioceptive system is the awareness of where our bodies are in the world, where parts of our body are placed and how much pressure you need to apply with any part of your body.
If you have a heightened sensitivity to proprioception then you would likely avoid any weight bearing activities, may move slowly and carefully, holds things very lightly, dislike running and avoid banging into anything.
If you are hyposensitive to proprioception then you would be seeking the sensation of crashing into everything, running and jumping a lot, enjoy tight bear hugs, walk on tiptoes and hold things very tightly.
Every autistic has some measure of sensory imbalance in one or many sensory areas.
We suffer something called Overwhelm which is often caused by sensory overload; where we have experienced too much of one type of sensory input and our brains cannot filter it out. This can cause panic, anxiety and a flight or fight response which can display as violence.
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.
7. If your child has sensory issues, find a good Occupational Sensory Therapist
An Occupational Sensory Therapist can not only help your child by providing the stimuli they need to regulate their sensory systems, they can also teach you and give you 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 and concentrate.
We have had an OST since my son was 18 months old and we would not be without her for the world as she has helped my son more than all other therapists combined.
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 speed whereas some of us process information very slowly and it takes us longer to react or respond.
This means, in layman’s terms, that when you ask someone with a slow processing speed to do something, it takes longer for us to understand the request and then more time to work out how we need to respond to it or what we need 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 try and get the person to understand what they are asking them to do. The problem here is that, when you make the request using different words, our brains have to start processing this new sentence all over again so, by asking again differently, they are doubling the original processing time.
The tip here is, if your child has a slow processing speed, give them extra time to process. If you ask them 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 shoes on, put coat on etc.
Having a slow 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, as they cannot use words, they can’t understand them either.
It has been found that non-verbal children understand words and conversations long before they can talk.
The tip here is; 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 those around them 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 where you will take your child.
When you have an autistic child, you need to throw that ideal out of 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!
Whether it’s arm flapping, rocking, squeaking, fiddling – let your child stim.
Whether you find it embarrassing or unusual, stimming provides so much for your child.
It brings joy, self-regulation and calm – why stop that?
By stopping them stimming, you can cause them anxiety, frustration and unease
12. Don’t shout
I’m as guilty as anyone 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 flight or fight response in your child.
In short, don’t shout – it has absolutely no positive outcomes, other than venting your own frustrations which can be released in other ways. I find screaming into a sink full of water 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 will give you as to how much their bottle has been shaken.
When it is still and calm, you are able to push and encourage your child a lot more than when their bottle is already shaken up.
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 is something that you don’t have an interest in, encourage it.
Chris Packham is a great example of how a special interest can turn into a very good 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.
One thing that ABA does is stop autistic children stimming which causes them a great deal of anxiety and takes away a big source of joy, comfort and security.
It is widely despised by the autistic community.
Please don’t put your child through this.
16. The different types of ASD
To date, there are three different groups within the ASD diagnostic profile (that relate to autism); classic autism, Aspergers (the name of which has now been dropped) and Pathological Demand Avoidance.
There are very distinct differences between each of these three groups and each group respond differently to therapies and treatment towards them.
It is very important to know and understand which group your child is in, in order to provide them with the best support that they need.
In particular, children with Pathological Demand Avoidance will have a need for control which is fuelled by anxiety. They will also have an exceptionally high demand avoidance level. The more you try to push a PDA child to do something, the more anxious, controlling and avoidant they will become. There are different tactics that can be used in order to encourage a PDA child to complete tasks but these are very different to those you would use with an autistic, Aspergers or NT child.
Autistic children can lash out and be violent.
This is generally caused by overwhelm or anxiety. When they are violent you need to understand exactly what has triggered it and work at removing the trigger. In the heat of the moment this can be very difficult to do – especially if you are the person that their violence has targeted, but you can still learn from that situation in order to avoid them being triggered in the future.
Shouting will make it worse and restraining them MUST be the last resort as autistics tend to react incredibly badly to being restrained as it causes a great deal of anxiety.
18. Love your child
Maybe the most important tip of them all. Even if you don’t understand them 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.
The difference it makes it exceptional and so so worth it. Take it from someone who knows.
19. 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 difficulties.
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 exceptionally helpful.
There are a great deal of different Autism Support Groups on Facebook; some great, 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.
20. Demand Avoidance
All autistics suffer from a level 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 good way as then the demand is turned into a choice, which their brain can deal with.
Getting frustrated at them will not make them overcome the demand avoidance; it will just make it worse.
So there you have it; 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.
Until next time!