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20 Top Tips for Raising An Autistic Child13 min read

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 play­ground poly­he­dron shown below.

Picture of playground equipment, a hollow dodecahedron made of metal bars.

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 neigh­bor­hood to neigh­bor­hood.

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. Click here to read more on those last three.

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 cannot 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 rec­og­nize 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 behavior. 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 behavior 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. You can read here how a pro­fes­sional dog trainer reacted to ABA therapy.

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.

Let me know in the com­ments how you felt about the article or what sub­jects you’d like to see cov­ered in the future!

-J

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15 Comments

  1. i have aspergers and m.e .long list health issues.i take part in a lot lot research
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  2. I’d like to add some­thing to your dis­cus­sion of audi­tory pro­cessing. It isn’t just a need for more time to process what has been said or asked. If the same mate­rial is repeated, and it’s already an over­load, then it will remain an over­load. The need is either for the speaker to speak more slowly or break the mate­rial into chunks.

    I often phase out com­pletely when too much is being thrown at me, so repeating it isn’t going to change a thing. This is par­tic­u­larly true when the person is speaking rapidly, or when there’s some­thing else I have to process along with the words — like an accent or slur­ring. I’ve gotten in the habit, when it’s some­thing impor­tant, of asking the person to repeat more slowly. More rarely, I’ve also had to ask them to speak more clearly.

    1. Author

      Thanks Catana,
      I com­pletely agree. It takes me quite some time to come down from over­load and if someone keeps asking me the same ques­tion, it makes me feel like it’s more of a demand as well (which then kicks of the old avoid­ance) and increases the over­whelm and over­load.

  3. Hi, I’m an autistic wikiHow writer and I’m trying to put together an article with advice for par­ents on Pathological Demand Avoidance. (I wish I could put together an article for autistic teens/adults who have PDA too, but there’s prac­ti­cally zero infor­ma­tion I can find with regards to that.)

    Do you have any advice with regards to good sources? Especially sources written by adults with PDA them­selves?

    (In case it helps, I’ve been reading about autism for around 5 years, so I know to steer clear from Autism Speaks and ABA and all that. The goal of my article is to help par­ents find useful strate­gies, and to help them stay patient and kind to a kid who’s strug­gling. And, above all, to encourage them to empathize with their kid.)

    1. Author

      Hiya, the PDA society is the best place to start — they really know their stuff on there.
      There are also some great Facebook blogs;
      Steph’s two girls
      Notes on PDA
      Starlight and Stories
      Riko’s PDA page
      Love PDA
      Autism with lots of love
      Sally Cat

      There’s also a guy called Harry Thompson who has a YouTube channel which is really great.

      I hope that helps and best of luck with the article!

      1. Thank you so much! This is really helpful! I’ll check out all of those, and men­tion them in the article too so that par­ents and loved ones can see them. 🙂

        1. This was really helpful. I’m just learning about PDA and am going to look into the sources you list above. I think that’s the one piece I’ve been missing in under­standing my children’s behavior. The way you break down audi­tory pro­cessing and over­whelm was extremely helpful.

          I have met with the “Don’t accept labels” thing and I don’t know how to respond. I usu­ally just think, ok, don’t go to this person for sup­port, nod and smile, and duck out of the con­ver­sa­tion. How do you deal with it?

  4. I find your tips and expla­na­tions EXCELLENT!!! So useful and prac­tical. Thank you.

    1. Author

      Thank you so much!

  5. Such a heart­felt article and so helpful. The tone is so empow­ering and pos­i­tive yet real­istic. Thank you so much. Hope to see more arti­cles from you soon !

    1. Author

      Thanks so much! Watch this space 🙂

  6. Thank you for this thoughtful and insightful article. I wish I had had the ben­efit of this advice when I was par­enting my autistic child (now nearly 40 years old). Some of these things I grad­u­ally fig­ured out; most of them I didn’t. Nearly all of the sen­si­tiv­i­ties described here are painfully familiar. Learning more about them even at this late date helps me under­stand what we have been through together and where we are now (which is in a good place, I think).

    1. Author

      Hi Beverly, I’m so glad that this article has helped you under­stand a little better 🙂

  7. Hi! Thanks for all the infor­ma­tion. I have a ques­tion about your com­ment on ABA. I have many moms in my daugh­ters therapy waiting room RAVING about ABA. So to hear you say do not do it is totally shocking. Is there an article with more infor­ma­tion? or can you email me? My daughter missed the autism diag­nosis by half a point. She is 3 and a half and doesn’t say many words, has a lot of sen­sory issues and doesn’t socialize in groups (amongst other things…) She has speech once a week and occu­pa­tional therapy every other week (due to the ther­a­pists schedule) thanks!

  8. As an SLP thank you SO much for this article! I plan to share it with the many fam­i­lies I work with that parent autistic chil­dren.

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