Therapies for kids - worth it?

[MNAus]

Two of our kids have been recently diagnosed as ASD 2, though I would suggest tending towards 1 for both of them. The road to that was long. We've already had a few different experts helping on bits and pieces in the past, but now we have the diagnoses we're looking to make things more structured. The problem we're having is that our experience with most therapies to-date is that they have been pretty much useless. I'm not sure if we've had bad luck with the therapists themselves, or it's the actual disciplines, but a lot of it is coming across as basically a sham. We had a decent speech path who was honest and said when she reached as far as she felt was useful, but the rest have been wholly unimpressive. OT has been the worst, and costs an eye-watering amount just to have an enthusiastic graduate throwing a ball and asking them to play with toys. They all seem to be unable to keep to their speciality and opine on different areas and it's difficult to actually see any improvement whatsoever. Does OT ever do anything useful? It almost feels like we've ventured into the realm of pop-psychology and alternative healing.

Our attitude to our kids is that they don't need to be "fixed" but if they are able to pick up skills that will help them - either as alternatives to skills that come naturally to peers or by achieving some sort of parity through a little extra effort - then that's all good. But the vibe we're getting is that the specialists are going through the motions of everything they learned in an evening course and have been dying to try out on a warm-blooded doll, and abjectly failing at achieving anything at all. I'm actually questioning if the whole premise of this sort of specialist help is flawed and that we're both wasting money and doing our kids a disservice. Part of me wonders if we shouldn't just reject the whole lot.

Does anyone here have any experiences they could share? We want to make the right decisions, but despite this being conventional wisdom and pushed by their paediatrician, something doesn't feel right.

 

[Outdated]

I've been discussing a lot of these types of topics with someone recently and we came to the conclusion that most therapists aren't overly bright. Learning more about your children's behaviour and finding ways of allowing them to be themselves might be the best option.

Another thing that popped up in discussion is the difference between those of us that were diagnosed as children and those of us that didn't find out about our autism until later in life. Most of us that found out later in life had no choice but to adapt to the world we lived in and we developed the social skills necessary to build successful lives for ourselves.

Perhaps this might be an option for you to consider too. Let them adapt to their world without any preconceptions pushed on them but have enough understanding of them that they always feel home is a safe haven when the outside world seems a bit cruel.

[Edit] I'm also ASD2.

 

[Rodafina]

I was once one of those cheery faced graduates, eager to test out all my newfound knowledge with a child and their family. The intentions there are surely good, but I agree with you that there is often a mismatch between what is learned in university and how it is applied in real life.

Although I don’t know much about your specific experiences with therapists, as the parent, you would be the one who sees the full picture. People learn generalized theories and approaches in school, but none of that can be useful if it doesn’t specifically fit the child and the family in a sustainable way that affects lasting change. Sometimes, the goals of therapy are to start developing underlying skills that will manifest over time, and so progress can be difficult to mark right away. Nevertheless, it sounds like you are present and involved and you have witnessed that there is no great benefit to your kids or to your family.

As with all therapeutic approaches, it all comes down to the human providing them. So many of us are flawed humans who, even with the best intentions, have equally flawed approaches to helping others.

Especially with autism, where there is no cure, some of these therapies may be limited in how much they can help. Many of the current theories of early intervention end up forcing kids further away from their natural spot on the spectrum and into a more neurotypical world. While it is important for children to learn how to survive in this world, at such a young age fostering their inherent skills, self-esteem, and understanding of thoughts and feelings seems more important to me.

I think one of the problems is that as a parent, it would be nice if you could receive help and support in nurturing your children and fostering their development. If the therapists aren’t providing the right type of support for your family, perhaps there could be other avenues for this. I’m not really sure what those are, but some things that come to mind are structured activities in small groups that would encourage building interests and learning… Like hiking and playing in the forest? Art or dancing classes. Perhaps playing with other autistic children and finding parents of other autistic children for support? I’m not really sure. Hopefully others here will have some helpful ideas, too.

 

[Atrapa Almas]

Its not therapy what you should be looking for, but training and understanding. Some up to date proffesionals talk about training parents to understand kids and training kids to understand themselves and the crazy world.

Sadly most therapists have old, outdated knowledge and may harm more than help. So your concerns are right. Just by protecting your kids from TRAUMA you will save them from 80% of the problems our adult autist generations do suffer.

So if you have to focus on just one thing, Do Protect them from Trauma. If you stay in this forum and participate in our conversations you will soon see a patern. Most of our comunity problems come from Trauma, not from autism itself. Those of us who felt supported and loved by our families and had some friends did experience Autism from a very different perspective than those who where rejected by their own families and were unable to find love out of pure masking and pleasing others.

But, fortunately, you dont have to focus on just one thing. There are modern up to date professionals. We have a lot in Spanish, and our social media are full of #actuallyautistic people recomending good proffesionals and actually working together, doing #actuallyautistic interviews, explaining autism stuff to both autists and NTs and also explaining NTs stuff to autists so they can understand how NTs minds work.

Daniel Millan is one of the most Knowns Spanish autism specialists. He doesnt work in english, but his book was recently translated to english:

AUTISTIC - The ultimate guide to surviving in the wild neurotypical world: Amazon.co.uk: MIllán López, Daniel: 9781447837916: Books

Buy AUTISTIC - The ultimate guide to surviving in the wild neurotypical world by MIllán López, Daniel (ISBN: 9781447837916) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

www.amazon.co.uk

I can recomend it to you. It has a lot of practical stuff that you can use to help your kids. There are many more good books that you can use to become your kids best therapists/life teachers in case you cant find a good profesional.

Best of luck.

 

[rainfall]

Hello. My son has autism, diagnosed right before 3 years old and a second opinion right before 4 years old. We started out in speech therapy. He was nonverbal but is not now. The speech therapist could not handle his autistic energy and other things and started to get angry with him so we left.

I found another place that treats him like a person and always has. He started out there with Speech, OT and Physical therapy after being evaluated. He's now 13 and has only been in speech for a few years now. I understand there are green and clueless therapists, but these women have always said that I'm the expert on my son and we work together. They have knowledge and expertise I don't and have helped me and I have knowledge and expertise they don't and have helped them. My son has been a bit of a challenge for them at times throughout the years.

OT helped my son A TON with his sensitivities early on. He couldn't touch playdough or many other surfaces without gagging or throwing up. She used different methods, but all was about desensitizing to touch and since he was little, it was fun and used a lot of toys and things. He absolutely loves playdough and no longer gets sick. OT also helped with some fine motor skills he was lacking, like holding utensils, (which he rarely does because of the very limited food he will eat from but can use them well now) tying shoes (for him it's still too difficult but he was making progress and we'll get back to it), etc. and she would also give me suggestions based on what I noticed about him in regards to him trying to write and it hurting and his feet hurting and suggestions on what shoes might be better. I was grateful for the help, because everything was brand new to me and I had no support at home for even believing in his diagnosis, let alone me getting him the support he needed.

When it seemed like he was doing good they suggested a speech group and I put him in it instead of the separate, individual therapies he was receiving. This way, he is getting extra help in figuring out social things as well as speech and he's not the only one who is getting it. It was really hard for him at first, but now he likes going and doesn't like to miss.

This is just my experience and I know everyone has a different one. I know there are some parents who do all the therapies at home and it's worked for them. Which, of course, I took the suggestions home and tried them as well, some working and some not and tweaking all to best fit my son. If there's no progress there, are there other specialists in your area with more experience that you can try? Where my son goes, there are college students who come to do internships and are allowed, at the parent's agreement, to work with and observe, but the regular specialist is always there and still leading the therapy.

 

[Kayla55]

Sadly my experience is 'milking the money' and charge per session. So wise up parent and internet is full of free info. When I fired the old fashioned crag of speech therapist, I found Carrey Clark, awesome. I used Mary Barbara's advice and instead of timesheet with tracking meds, I created a list from her of which asd symptoms were disruptive. Then instead of fixing everything, we focused budget on area where needed.

Another thing about asd children is outgrow red flags mostly by themselves (aside from list just mentioned) so I'm against early intervention and my son needed few pointers and the rest he sorted out himself, only when he became talkative was it obvious he was a smart kid. I'm glad we never destroyed too much of his inner world.
I suppose for me I'm not strict on social behaviour as I see world differently and I noticed he does too. Mostly what was fixed was speech ND going out. It ruining our lives and his. The rest is small hurdles that is just asd so stop worrying so much.

 

[Kayla55]

I get this annual newsletter from tools to grow, mostly the bi-lateral tips are not useful, maybe he's just figured it out himself. Being leftie he needed more time practicing handwriting at home, by time school was fussy he seemed handle it. Lot can be done with practice at home.
Have OT give you a report and decide for yourself if it's knife and fork can we learn at home, is it age? Ask them if outgrow this. But OT is good assessment and report to have, but with private they can milk you.

 

[Magna]

@MNAus are you talking about ABA therapy in addition to OT and Speech?

 

[Kayla55]

@MNAus are you talking about ABA therapy in addition to OT and Speech?

I'm saying assess your OT specialist, if you as parent decided to overreact to a 3 year old, I advise against it.
So OT should help with school readiness and at grade R level, test sensory.

I say some items may need ABA because it's coined that but in reality many NT kids are not ready to leave parents and cry being dropped at school. Montessori I agree that only take child from 3 years up and won't allow crying they simply say child isn't ready.
A child on spectrum may be more persistent as our son refused to go to class at creche too!!
If we stayed on farm for over a year I'm sure he'd eventually have accepted my friends into circle, but we may have to work. At first he didn't want to take walks alone in forest. I picked him up, locked the door, took him out gate and he ran back to the door. I was gentle and kept nugging him out the house. I told him everyone went out, let's go see the cows, he fussed and I picked him up kicking and screaming. Should we do this??
This is why some people say use a mixed method of therapies and incl. ABA
Sending your child to ABA school to be forced to transition activities is question? Montessori school doesn't do this.

 

[mysterionz]

Therapy among autistic kids is a slippery slope due to the reputation ABA has. They want understanding and acceptance, not confirming to what society wants us to think and act.

 

[Neonatal RRT]

Its not therapy what you should be looking for, but training and understanding. Some up to date proffesionals talk about training parents to understand kids and training kids to understand themselves and the crazy world.

^^This^^

Furthermore, I am of the mindset that the trauma that @Atrapa Almas speaks of is directly or indirectly a result of a combination of: (1) Not focusing upon training and understanding. A child needs to understand the condition, not from the perspective that there is something "wrong", but rather more of training the child to think with regards to pausing to take in context and perspective before speaking and acting. Don't focus upon what they can't do, but rather emphasize what they can do. Furthermore, special interests, if focused in a positive direction, can lead to special knowledge and skills they can use later in life. (2). Life skills! If they are "dependent" upon others, that puts them at not only a subordinate social position, but people can take advantage of them, or worse. (3). Autism is one of the low dopamine conditions, so motivation to do things can be a challenge. They need to channel their thoughts towards goal-oriented behaviors and thinking, have a purpose, and have responsibilities. Furthermore, do not let actions be filtered through feelings, because they may not feel like doing anything, rather they just need to understand the concepts of duty, code of conduct, responsibility, and purpose. Nobody feels like going to work and cleaning up after themselves, but you have to do it anyway. (4) Positivity! The brain does not think in negatives. If a person is climbing a ladder and they are scared, the last thing you want to say is "Don't look down." because they will. Rather, you should say, "Keep looking up, keep going, you're almost there." Always direct behavior with a positive action and motivation. Out of site, out of mind. The second you say, "Don't....", they will, because you've reminded them of it, and now they are thinking of it. (5). Life skills should also include some teaching on how to recognize the 1-3% of "predators" out there, the sociopaths, the psychopaths, and narcissists that are the great manipulators. If you're autistic and don't have these skills and are just dealing as best you can with these personality-disordered people, they will cause a lot of harm to the autistic person. Again, 97% of the population can be good people, it's that 1-3% that can cause a lot of damage.

 

[Kayla55]

^^This^^

Furthermore, I am of the mindset that the trauma that @Atrapa Almas speaks of is directly or indirectly a result of a combination of: (1) Not focusing upon training and understanding. A child needs to understand the condition, not from the perspective that there is something "wrong", but rather more of training the child to think with regards to pausing to take in context and perspective before speaking and acting. Don't focus upon what they can't do, but rather emphasize what they can do. Furthermore, special interests, if focused in a positive direction, can lead to special knowledge and skills they can use later in life. (2). Life skills! If they are "dependent" upon others, that puts them at not only a subordinate social position, but people can take advantage of them, or worse. (3). Autism is one of the low dopamine conditions, so motivation to do things can be a challenge. They need to channel their thoughts towards goal-oriented behaviors and thinking, have a purpose, and have responsibilities. Furthermore, do not let actions be filtered through feelings, because they may not feel like doing anything, rather they just need to understand the concepts of duty, code of conduct, responsibility, and purpose. Nobody feels like going to work and cleaning up after themselves, but you have to do it anyway. (4) Positivity! The brain does not think in negatives. If a person is climbing a ladder and they are scared, the last thing you want to say is "Don't look down." because they will. Rather, you should say, "Keep looking up, keep going, you're almost there." Always direct behavior with a positive action and motivation. Out of site, out of mind. The second you say, "Don't....", they will, because you've reminded them of it, and now they are thinking of it. (5). Life skills should also include some teaching on how to recognize the 1-3% of "predators" out there, the sociopaths, the psychopaths, and narcissists that are the great manipulators. If you're autistic and don't have these skills and are just dealing as best you can with these personality-disordered people, they will cause a lot of harm to the autistic person. Again, 97% of the population can be good people, it's that 1-3% that can cause a lot of damage.

Montessori method states do not do for your child what can do for themselves,

Autistic child may have being exposed to creche very young, making it less noticeable child won't leave home or enjoy company of strangers. Also potty training takes longer so our son was another reason for not being ready for Montessori at age of 3.
If I never intervened on going out he would kicked and screamed at wrong age refusing to go to OT for report dismiss his school going age.
So if parents act like going out then baby or infant was left at creche to endure sensory which is completely horrific at that age.
I'm honest because it was hubby who sent him to regular creche and Christian principle allowed him to play in the corner, it took 6 months.

Reports on child biting at creche and parents don't know what to do, TRUTH asd kids do not want to leave the house!!

 

[Kayla55]

Mother-in-law who was a dragon....

Aside from her nails being so long she could barely change a disposable Huggies this women agitated the life-force out of me. The walking ring present was tossed into garbage to have my ex in row. I had to apologise on their behalf that I didn't want it but was tolerant until I decided lazy bimbo allowed infant too many hours exposure to form hip dysplasia. Dear God, if I hadn't come home early from visiting my sick Uncle and intervened it would created havoc on child with co-ordinator issues.
I could go on and on but I have heartburn myself and have never seen NT use so much Gaviscon, and the morning-sickness tablets are swallowing poison to sacred life form in me, no. No. No. Of course these mom's always need to work and use creche facilities, no offence but I'm not leaving my 6 month old with a stranger.
But of all the sacrifices, unpaid maternity leaves I lost out on, God blessed me at being good at my job and returning to still be good at what I did. So God was good to me as a women.

 

[Shamar]

Two of our kids have been recently diagnosed as ASD 2, though I would suggest tending towards 1 for both of them. The road to that was long. We've already had a few different experts helping on bits and pieces in the past, but now we have the diagnoses we're looking to make things more structured. The problem we're having is that our experience with most therapies to-date is that they have been pretty much useless. I'm not sure if we've had bad luck with the therapists themselves, or it's the actual disciplines, but a lot of it is coming across as basically a sham. We had a decent speech path who was honest and said when she reached as far as she felt was useful, but the rest have been wholly unimpressive. OT has been the worst, and costs an eye-watering amount just to have an enthusiastic graduate throwing a ball and asking them to play with toys. They all seem to be unable to keep to their speciality and opine on different areas and it's difficult to actually see any improvement whatsoever. Does OT ever do anything useful? It almost feels like we've ventured into the realm of pop-psychology and alternative healing.

Our attitude to our kids is that they don't need to be "fixed" but if they are able to pick up skills that will help them - either as alternatives to skills that come naturally to peers or by achieving some sort of parity through a little extra effort - then that's all good. But the vibe we're getting is that the specialists are going through the motions of everything they learned in an evening course and have been dying to try out on a warm-blooded doll, and abjectly failing at achieving anything at all. I'm actually questioning if the whole premise of this sort of specialist help is flawed and that we're both wasting money and doing our kids a disservice. Part of me wonders if we shouldn't just reject the whole lot.

Does anyone here have any experiences they could share? We want to make the right decisions, but despite this being conventional wisdom and pushed by their paediatrician, something doesn't feel right.

A lot of good advice here. What it really boils down to is -- What are your goals? Do you seek a cure? That can't be done, despite what the "experts" tell you. The best they can do is abuse your children into "normal" behavior, while introducing trauma, fear, internal conflict, and mental problems. I suggest you run at the first sign of an offered cure. The other option is to find a therapist who understands autism, and can teach them how and why they are different, what their strengths are, and guide your children through the difficulties they will face. These are few and far between, and you will be lucky to find one. Most of the rest are useless fluff who will take your money and do very little, although they are well meaning.

You are probably correct to say you have ventured into the realm of pop psychology and alternative healing. There are good ones out there, you just have to search. I suggest you interview prospective therapists as if they are job applicants (which they are), and remember, they are working for you, Unsatisfactory results mean they get fired.

 

[MNAus]

Thanks for all the input. Wow, that's a lot in such a short time. Very much appreciated. Before I reflect it's worth noting that I'm likely also ASD. On the usual instruments and from discussion my psychologist has me scored high enough that she feels it's all but certain, plus we have a few other things that very strongly suggest this. I'm in the waiting list for formal diagnosis but there's zero doubt in anyone's mind. Also worth noting that the kids are aged 7-10. Apologies for omitting this important detail.

So first off, it's good to read that some people have got great benefit from therapies. I don't doubt that there are a few good specialists out there, but there's a helluva lot of frogs we're kissing first. I think we're going to have to mentally accept that there is going to be a LOT of work filtering out the well-meaning "fluff". I think that likely varies per country. We're in Aus, and my experience of secondary care practices that are adjacent to popular woo-medicine is that you have a very mixed bag. For every medical professional with evidence-based practice, you seem to get a lot of well-intentioned folk who really aren't very good. I can't change that, so we need to work with what we have.

I guess you've all helped me to confirm an approach we discussed as parents. There are a million things we could try and as many therapists who would happily take money to have a go. But I think we'll work from the premise of "equipping" rather than "adjusting". And although it's super-tempting to have a feeling of "my kid doesn't need to change, the WORLD needs to change" we also recognise that using your own child as the battering ram to smash down the doors of unfairness is probably not the right thing to do. They will need to be equipped with skills that, were the world a fairer place, they probably wouldn't need. That's just how it is. But that won't be any hint of changing to fit in.

So as we put the goals together for them we're going to challenge ourselves on our rationale: are we giving them an extra hand in mastering "regular" skills that are entirely within their grasp, are we providing additional skills to counter the challenges they have, or are we actually trying to alter something which is fundamentally just how they are? Naturally the last of those is what we want to avoid, but it's very easy to blur the lines between the first two and the third so we're going to need to be sharp to challenge ourselves. I think we're also going to need to be open and clear on the rationale with them. We've always been positive about their Autism, there's absolutely no shame. And, of course, that's all against a background of accepting who they are and recognising that the world won't always do that, so we're there to support them when it doesn't and help them to back themselves as they grow.

Regarding ABA: as a whole therapy, I don't think so. But using positive reinforcements as a tool for helping the kids remain motivated as they learn skills that come from a positive direction (i.e. not changing them to fit)? Perhaps. Again, our judgment and rationale for setting a goal is important here.

Thanks to everyone that replied. I'm feeling more confident now. Great to hear your experiences.