All the money I spent on Autism therapy a waste

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"I have a nagging suspicion that all the money I have spent on interventions for my son with autism has been a huge waste."
https://honey.nine.com.au/mums/autism-p ... 6bca02ec5b

As a parent I concur with the OP in the article. The child learns to adapt to conditions in therapy but doesn't always apply what they learn back to real life.

It’s been the same for my son. The interventions are not that beneficial, but they are covered by insurance, and some of them give me a break here and there.

Overall, it’s been underwhelming. The stuff he learns in play therapy doesn’t transfer over. Having a behavioral specialist doesn’t help because I’m doing things right (they mostly work with parents). The interventions he’s getting with his IEP aren’t helping. The skills aren’t transferring over.

The autism summer program wasn’t that therapeutic, but it was fun so that’s good.

Nothing really helps that much. The best thing that has helped is stuff that I do with him on my own and letting him be him.

I just want to continue working on problem behaviors (meltdowns, impulsivity, and social stuff that keeps him from making the friends that he wants).

A small fraction of that money could have been spent to allow your son to enjoy a special interest and reduce the stress in his life, which would make it easier for him to handle the rest of his life.

This is an interesting topic. We're all led to believe, without question, that intensive interventions lasting the duration of an autistic child's development are not only the best remedy, they're the only remedy. I have a niece with autism who was diagnosed around age 2-3. She has gone through an extensive and intensive battery of interventions including the insistence of making eye contact with people. It's been very hard and sad for me to see her parents try to change her in ways such as that.

My Mom absolutely allowed me to be myself literally from the very first day of preschool when after she came to pick me up and the teacher told my Mom she was concerned because I refused to play with the other kids in group play and instead wanted to play by myself with toys the entire time, my Mom told the teacher she wanted me to be able to play by myself if that's what I wanted to do.

My Mom made our home, my world and my environment to be a safe space, a place for me to be me; my world, my yard, our woods were places for me to explore and be happy in. It was a safe and accepting environment where I felt completely at ease. That worked so well when I started school because that world and the other kids was such a challenge for me. The academics were easy. It was the structure, the distraction, the social interaction, the bullying (not all the time) that were hard. Even so, I knew that as soon as I got home, I was free..

The idea of growing up as I did but coming home and having my parents "work with me" on how I should be and having my parents play an active part in trying to change me. That would have horrible. That would have been sad. That would not have helped me.

I'm so thankful I was able to be myself and learn on my own (for the most part) how to navigate life. Was it downright brutal at times? Oh my gosh, yes. But I learned.

My Mom's extent of teaching me was based around teaching me basic manners and her mantra: "If you don't have anything nice to say, don't say anything at all." That became my pre-filter. Yes, it resulted in me keeping my mouth shut most of the time and stopping myself before I would actually say the awkward or inappropriate things I was thinking, but it worked.

I agree with everyone here (Twighlight you have a kid why didn't you say?)

We gave up on intensive therapy and focus on "fun therapy" taking our daughter out to see movies (like Toy story 4), letting her organise her own birthday parties, travelling often so that she is always doing fun stuff on holidays like wall climbing, tree climbing, kick scooting and going to music concerts.

She has opened up a lot more.

Apart from a brief stint of art therapy my daughter has had no therapy. She has however had private art lessons, swimming lessons and all the other kind of stuff kids have. She is at a brilliant school with lots of opportunity and that helps. Saying that I am totally ok with the fact that she only wants to spend time with select people and might happily choose a movie night at home or reading her book over socialising.

In my professional life I don’t encourage ‘talk therapy’ for students with autism but focus on doing stuff (ideally with hands) where we build a relationship and accidentally end up talking about stuff....

Well my mom had fixed me, speech therapy taught me language and social skills, occupational therapy helped me with my balance and sensory issues. She doesn't see it as fixing me, she saw it as helping me so my life is easier when I am an adult.

The key is to focus on what you shall work on to make your child's life easier. I was always licking and smelling things. My mom couldn't get me to quit smelling so she decided to just leave it be and it's just part of who I am. Some people need to smell their food before they eat it. My son does that and if he doesn't like how it smells, he knows how it is going to taste and he won't like it and he isn't even autistic. I still smell things to this day. You can do your own therapy with your child than spending money on someone else doing it for you. There are sources out there and you can work on it with your child and there are activities they can do that will help them like pottery, horse back riding, swimming, gymnastics so your kid doesn't feel like you are trying to fix them. You can even involve your other kids too when you are doing social stories so you kid doesn't feel left out and like they are being fixed. Temple Grandin has talked about how she and her nanny and her siblings would play board games and it helped her with her social skills.

Yes I still keep speech therapy, my daughter finds it useful if nothing else than understanding how to read people, our speech therapist focuses a lot on non verbal cues. In that regard it's money well spent.

My daughter never benefited from OT but I understand it works for some children to improve motor skills and routines.

I have talked about him in different threads.

I often like to use WP as a distraction, though, because I’m so focused on him.

Anyway, the interventions that I use are ones that he enjoys. His play therapist has a positive attitude about autism and has ADHD herself. I think skills he works on with her might transfer over more when he’s older.

I like that he has a behavioral specialist because she goes into the school and can tell me if there’s anything that they are doing wrong that I should know about so that is helpful in a way.

Horse therapy has been a fun activity. It might be the most beneficial intervention we’ve used so far, but it’s not a frequent enough activity to make a huge difference. I wish I could afford to own horses...

I wouldn’t use any intervention if the person had a bad attitude about autism and was trying to change that or if my son didn’t like it. I chose not to go as intensive as I could’ve for this reason.

The most helpful thing is doing stuff together and sharing special interests. We often read, play video games together, go on walks, and do educational activities that he enjoys. He is very mildly on the spectrum so I’ve never had trouble with him not opening up, but he struggles with meltdowns and impulsivity.

Last edited by TwilightPrincess on 30 Jun 2019, 10:48 am, edited 2 times in total.

Let us look at this picture. The caption says: 'He still plays with sand for hours at a time.' (Supplied)


Then compare to this graph (see https://wrongplanet.net/forums/viewtopic.php?t=296628)


What can the mother do? The answer is: all too many things.

(a) She should prepare a card album (made from 4x6 index cards and mini-photo-album of the same size), and draw picture of the beach. She should show that album to the son every time before they head to the beach.
(b) They can build sand castles. They can draw and write on sand.
(c) At home the child could watch sand castle projects on YouTube.
(d) On the child's birthday each year, the parents can make a celebration poster (can be shown in school). The poster could include pictures from the beach from various years.
(e) Take the child to different beaches. Those experiences are excellent essay topics. Parents can write the essays and draw pictures when the children are young. When children are older, parents could collaborate with teachers, and make it into a school assignment, so children and write and draw pictures about their beach projects.
(f) At home, parents could make Non-Newtonian Fluid (e.g. oobleck) projects with the children. This again is excellent topic for essay writing and/or animation video making. It's also good opportunity to make a video for the child to explain the steps and characteristics of the Non-Newtonian Fluid.
(g) At bedtime, parents can draw and write and do picture-aided talking with the child about what they saw at the beach today, what things they did there.
(h) Use beach to solve tantrum problems, and connect to the bad experiences of the child, and vice-versa. (See: http://www.eikonabridge.com/fun_and_facts.pdf

Basically, connect other experiences of the child to the beach, and develop his skills from there. The "glue" that connects everything together is visual-manual communication, namely, by using picture drawings, written words, and animation video clips. You would want to do all that in front of the child, because it's not just about input for the child: we want them to be able to generate their own output at some point.

The boy has been to the beach countless times. But, have all those opportunities been wasted? How much brain development can a child achieve by only playing on the beach? In comparison, my son learned all the skills he'll ever need to learn in life, and then some, from riding elevators.

The thing is, the boy has left a door wide-open for the parents. But the parents have not entered that door.

How can parents ever develop their children without wanting to draw pictures? That's a big puzzle for me. As I have always said, the only way of teaching parents to properly communicate with their autistic children, is by placing a piece of duct tape over the mouths of those parents. With their mouths shut, now they will use their hands to communicate. Very simple. Who says raising autistic children is hard? All you need is a piece of duct tape!

Thanks Eikonobridge...I always enjoy reading your progress with your son

I think his prognosis will be good by the sound of things. Especially if he is responding to behavioural interventions. The meltdowns and impulsivity is a challenge for all parents so you are not alone there. How does he cope with school? is he doing a mainstream curriculum?

He’s in mainstream. He only gets speech therapy and occupational therapy. He’s reading above grade level.

The behavioral interventions aren’t helping that much. He seems to alternate to an extreme extent, for no reason at all, between good times and bad. Just when I think we’ve finally gotten things under control, it gets bad again.

I think it’s possible that he has bipolar, but the doctor is holding off on that diagnosis for now. He’s only 8, but it does run in the family.

8 is so young still...he will mature particularly in adolescence.

I guess as a parent you have to try different interventions at least once (before ditching it), just because others have tried and not had success doesn't mean your son may not benefit. So despite the negative connotations of this thread I think contunue to try different things and continue to observe what is delivering results in terms of his behavior.

Each child is different and you may be surprised how much your son changes in the next few years.

My daughter was following a mainstream school curriculum till she reached 12 and now she follows a ILP and has her own personal goals.

The highschool we moved to her is government and caters to children of mixed ability who are aiming for trades/tech/work rather than tertiary studies. Most of the kids are normal but not planning to do higher studies (although I have met parents who want their kids to transfer as they are doing well). There's a significant proportion of kids who are ID and on the spectrum. Ironically she has had some problems with some boys who are Aspies and I have had to intervene to ensure her movements between classrooms don't coincide with meeting these kids.

She has friends in her class but apart from birthdays she doesn't got invited to any playdates unless we engineer these.

I’m definitely not afraid to try to different things. I’d only stay away from things that he didn’t enjoy and/or that had regressive attitudes towards neurodiversity.

His meltdowns are quite extreme. It can be pretty scary.

Last edited by TwilightPrincess on 30 Jun 2019, 5:47 pm, edited 1 time in total.