new member - 18mth twins with autism in Melbourne Australia

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Hi all,

My 18mth twins with Holly and Kate were diagnosed with autism last week, we have known that the diagnosis was imminent for about two months so have had a chance to do some research and planning. My girls are very active physically and big time sensory seekers including lots of cuddles and they show quite a bit of emotion, but are otherwise quite in their own worlds and barely aware of the other.

Therapy is mostly out of pocket here - not covered by health insurance, and the government provides each child diagnosed before the age of six 2 x yearly lots of funding of $6000. To begin with we are seeing a speech therapist and OT fortnightly, who we are very happy with, and I have been researching early start denver model to start a program at home. I really feel like a play based approach is best for their young age, though ABA is much more popular here and there are not many ESDM providers here at all.

For now I am project manager and primary therapist myself, and having 20 hours of assistance a week from three occupational therapy students I've hired. We're right at the beginning of this and I am training myself and training them, so we're not necessarily the most professional operation around but at least it is something we can fund (though with difficulty as that already sets us back more than 2k a month). It also means each twin gets 20 hours one on one intervention a week.

I am talking to a local uni who run an ESDM autism center to see if they can supervise a home program for us which would be great.

It is a really big job looking after both of the girls and I have been really struggling so it's great to now know the diagnosis and have a better idea how to support them. On the other hand things are a bit harder as now I have to manage and deliver their therapy - but at least I get to feel like I'm doing something!

The developmental paed is keen that if we see good results from their early intervention we can put them into a normal daycare a few days a week when they turn 2. This idea is pretty overwhelming, I think they would have to come a long way and definitely be understanding some gestures and some receptive communication. But fingers crossed.

I'm very interested to hear from others with any experience with ESDM, early diagnosis, or having multiple kids on the spectrum. (At the moment I am also researching floortime, more than words program, and ABA.. the different ideas fit very nicely anyway into the ESDM umbrella and basically right now anything that engages my girls is a win). I am on some Australian special needs forums but there is not much info there on ESDM and I haven't been able to find too many parent discussions on Dr Google so any suggestions much appreciated.

Some good things for us are that we are heading into spring so the weather will be improving and the girls love being outdoors. It's not safe to take them to parks etc on their own but I have ordered a sandpit, double swings, and water play/sensory station plus a play gym with slide so we are going to have lots of stuff for outdoor therapy.

Thanks for reading!

Lee

Hi Lee,

Welcome to WP. I was in the same boat as yourself 4 months ago. My son was diagnosed when he was 19 months. It was a complete shock to me. I suspected it earlier but it wasn't as obvious. The first 4 month was very tough. It has become better, but its still very difficult to accept. People on this board have been very helpful actually. I think you are on the right track.
They need the therapy and 20 hrs/week sounds about right. Although EDSM, and floortime sound different they are generally part of ABA. What that means is training a child to do something by way of reward. First you find what they like, for example an ipad, or in our case a cracker. You start by getting them to sit. If you sit you get a cracker. Our son would tantrum and resist, but can now sit still during his lesson. There are special desks and chairs that make it harder for kids to escape. He still tries to escape. ABA is very hard on kids, especially in the beginning. We would cry sometimes when he was crying. There is a delicate balance between being strict and not losing their trust and having meltdowns. The key is the therapist. We tried 7 and got lucky with one. In 4 months he has had enormous progress. He is still autistic, and he hasn't said any words yet, but our communication and trust is greatly improved. He can point to what he wants or bring it to us to open. As rough as the therapy is, I feel the results make him happier. Remember autistic people are often very bright, and can be very successful (half of silicone valley is on the spectrum). You should try to help your twins, and push them, while building trust. Its a very difficult road, but we do it because we love our children.

Hi Reesan. I can share a bit about us. I have twin boys who are now 3 years old who were diagnosed at 18 and 20 months, respectively, so a very similar situation to yours in that regard.

A couple of thoughts:

- Initial therapy was not difficult for us. We got luck with mostly good therapists who were great with the kids. ESDM is a wonderful model to use - we did Floortime, which is similar. When done correctly, there shouldn't be tears, especially not in the beginning when the therapists should be trying to get to know your children and build trust. I was very watchful for that. But, that probably depends on your children's strengths and challenges to some degree, too. If they have a lot of stranger anxiety, maybe it could be upsetting. But in our case, my children weren't too bothered by the therapists being around, and the therapists just followed the children's lead in playing. So, it all went really smoothly. Eventually, the children will get pushed more, bit by bit, but a good Floortime or ESDM therapist will know where to draw the line between frustration and distress, and help the children learn how to cope with frustration, while avoiding leading them into distress.

- I'm not of the opinion that Floortime and ESDM are just versions of ABA. I think the first two are similar, and that ABA is a whole nother (Americanism) thing entirely. IMO, Floortime and ESDM are best for building trust and teaching real social skills, that originate from the child. I think ABA is best for teaching a behavior, like give me the toy when I tell you to, or sit down. IMO, there is usually a role for ABA in helping kids on the spectrum, especially in things that will keep them safe, or help them get prepared to follow classroom rules. It can also help is training kids away from negative behaviors, like hitting others. But, ABA doesn't get to the root of the social-emotional issue, imo. That's why it's commonly understood that if you remove a behavior using ABA, another troubling behavior may crop up. I think Floortime and ESDM are much more effective in actually teaching children how to handle and express their emotions, thus providing invaluable information to the parent about how they are processing their world.

I think it's great that you're leading the charge in terms of therapy, and that you will be so hands on. That will set you up for the best possible outcomes. In addition, the therapists will never know more about your own children than you do. Please, please remember that. If something feels wrong, or is not speaking to your children's core needs, you can stop the therapists immediately. Most of them won't have children of their own (they are often young people in their 20s), so they really don't know much about child development. Especially ABA therapists, IMO I have had therapists tell me that they needed to put a plan in place to deal with one child's troubling behavior after he had a temper tantrum because it was time to take something away. He was two. Temper tantrums are normal, and they had just snatched it out of his hand. I would have been angry too! And it was not a meltdown - there is a difference. Needless to say, we didn't put a plan in place, and I had to educate this 23 year old therapist about what to expect from two-year olds in general. She had never even worked with typically developing toddlers before. So, feel free to be confident in your position as the momma!

Disclosure: My boys are very high functioning with reasonably good social skills (parental bonding, eye contact, joint attention) prior to diagnosis. Primary manifestation is a speech delay, unusual speech patterns, social skills that are behind in terms of their actual ages, and mild repetitive behaviors. We don't (yet, knock on wood) have issues with aggressive or self-injurious behaviors.

Thanks for your feedback Bkdad82. I think for us what we are intending to do with ESDM is pretty different from ABA, though we are keeping an open mind as to whether ABA might be appropriate when they are older. I think you are right that finding the right therapists is key. It's encouraging to hear that your son is on the right track and is happier.

Pddtwinmom, it is so good to hear from another parent of twins diagnosed so young. There are so many extra challenges faced having more than one on the spectrum and having twins to begin with is challenging too! It is nice to be able to share that experience with someone. I feel too that the beginning now is the easiest stage for us, because any engagement we get is a win so we can just take what they like and do lots of it, building that engagement and trust but not needing to push them out of their comfort zone too far.. But ultimately we will need to keep the accelerator on more than they are going to want to, some of the time.

I am really excited about using ESDM (and a play based, relationshiop focused approach more generally) over ABA. I talked to a lot of families these last couple of months and it took some equivoaction before I felt comfortable to invest in this approach. The australian families doing ABA are mostly in financial ruin but they are damn happy with the results in their children! Also I think there is more scope here to work with your ABA team to soften the approach (especially since you are hiring them out of pocket). So it was hard to go against their advice to begin with especially since ESDM is very new here and there is not much professional guidance available. But we are on the way to get some and off to a great start with me working with speechie and OT and then training my juniors.

I think we are going to make a lot of gains in eye contact and joint attention over the next few months, and they do have good parental bonding, so I think your early experiences are very relevant to me. I will probably be popping in with a few more questions for you! I'd love to know a bit about how your boys are doing now especially with their speech if you are comfortable to share? Thanks so much for your post.

Welcome to WP

Therapy for twins must be overwhelming at times, my hats off to you for being so on top of their care, like you are. Managing the care of my one can be a lot. I have one son who was diagnosed right before his 4th b-day and has been doing 21 hrs of ABA for 7 months now. I agree with pddtwinmom, that ESDM and FT seem similar and probably are a better start for super young ones like your two girls. ABA has been great for my guy, but pddtwinmom highlighted all it?s weakness. It really is behavior based and focused on actions, not feelings. Our ABA definitely incorporated plenty of FloorTime techniques, but at it?s heart it is about results not emotions. In my opinion that is big weakness of ABA.

I think that is why they are so focused on generalization, because they are teaching kids to do a specific task not teaching them how to do something. A good example would be the ABA way to teach a kid to write the first letter of their name would be to break the activity into many different sections. One goal would be to hold the pen properly, then put it on the paper, then make a line down, then a line across. That works on teaching a kid to write the letter ?t?, but doesn?t teach them to write the alphabet or about their name. If the kid picks the core skill up they will probably teach themselves the rest of the alphabet, perhaps with some help and practice on difficult shapes. If they don?t then the second letter of their name will be taught just like the first. All of this would be with done with ton of rewards and reinforcement.

Whereas FT probably would start with noticing letter ?t? around them and maybe spell out their name. Then have them work on holding a crayon while scribbling, maybe make a game out of it if the child was into it. They might read books about the alphabet or sing songs. Following the child?s lead model ?t? and move on from there. It would all be play based and engaging. I haven?t done ESDM/FT but I am guessing it is probably a slower process. However, the child more than likely comes out with a deeper skill and has also been working on other skills the entire time. In ABA some of that play based work would probably go on during the play and circle time built into your child?s schedule if you have a good ABA therapist, but the core of teaching your child to write down the letter ?t? is done a table broken down to discreet segments and recorded and graphed and analyzed to ensure an 80% compliance over 3-5 sessions before moving to step 2 of the 5-10 step program. In FT there is some tablework with the crayon to paper, but most of it is done off the table.

I think a good program involves all three methods, but has one at its core. A great program would really use the best approach depending on the skill needing to be learned and the child. If your girls are happy and progressing, then you probably are where you need to be, no matter the method. If you get a good therapist, no matter the technique, you should be able to guide them towards more floortime or tablework depending on the needs of your child. ABA is more parent goal led, so if I want more floor based work, I would ask them to create more goals around play and play based social skills and discontinue or hold some of his tablework goals, so the balance changed.

My guy really enjoys reading and math, so he likes some table work, but wouldn?t have a 18 mo. We are also getting ready for kinder next year so it is important that he has those attending and schedule and rule following skills. For him the table work is much better to drag words out of him too. He is a perfectionist and is very stingy with his words. Practice in that format and having to work for reinforcers has made big difference. He was an expert at playing without saying a word and he is such a happy kid, if he couldn?t get you to understand what he wanted, then he would just move on.

If you only have ABA you might want to supplement with your own FL/ESDM work and some social skills opportunities, though juggling two toddler and their therapy session, I know that is a lot to ask. It can be added in by modifying their play with some training on your end, so it isn?t an extra thing for the little ones or you.

Hi Reesan. Certainly ping me anytime! I'll help as best as I can. This road can be windy.

Setai made a very good point, and after reading it, I realized that I wasn't very clear in my post. She said that you can do many therapies at once, but there has to be a lead therapy. I 100% agree.I wasn't clear in the fact that we did Floortime AND ABA. We actually did 12-15 hours of ABA each week. But, the dominant approach was Floortime - we had a very senior Floortime specialist that worked with each boy and gave me guidance on how to manage their entire therapy experience, I employed FT in all of my interactions with them, and I made sure that the ABA therapists modified their approaches, too. We also had speech and OT. I just wanted to be clear about what we actually did.

As for speech, the biggest impact all of the therapies on their speech is that 1) their receptive language has grown by leaps and bounds. That's HUGE, and so much more important than expressive speech. There's time for that to come and alternatives that you can use while you're waiting (signs, pecs, etc). At this point, one child is almost caught up both excessively and receptively. He's about 4 months behind his peers. The other is close receptively, but still far behind expressively. He uses sign and gestures very effectively to communicate, and he has begun to talk, but it's coming out like jargon. That's a good thing, too, though! That means that he WILL be able to talk, just really late. But, he's very bright and understands very well, so we have a good foundation for a very positive long-term outlook.

Let's definitely keep in touch!

Typing on a cellphone, so sorry if certain parts are unintelligible due to typos!

Hi Reesan. Certainly ping me anytime! I'll help as best as I can. This road can be windy.

Setai made a very good point, and after reading it, I realized that I wasn't very clear in my post. She said that you can do many therapies at once, but there has to be a lead therapy. I 100% agree.I wasn't clear in the fact that we did Floortime AND ABA. We actually did 12-15 hours of ABA each week. But, the dominant approach was Floortime - we had a very senior Floortime specialist that worked with each boy and gave me guidance on how to manage their entire therapy experience, I employed FT in all of my interactions with them, and I made sure that the ABA therapists modified their approaches, too. We also had speech and OT. I just wanted to be clear about what we actually did.

As for speech, the biggest impact all of the therapies on their speech is that 1) their receptive language has grown by leaps and bounds. That's HUGE, and so much more important than expressive speech. There's time for that to come and alternatives that you can use while you're waiting (signs, pecs, etc). At this point, one child is almost caught up both excessively and receptively. He's about 4 months behind his peers. The other is close receptively, but still far behind expressively. He uses sign and gestures very effectively to communicate, and he has begun to talk, but it's coming out like jargon. That's a good thing, too, though! That means that he WILL be able to talk, just really late. But, he's very bright and understands very well, so we have a good foundation for a very positive long-term outlook.

Let's definitely keep in touch!

Typing on a cellphone, so sorry if certain parts are unintelligible due to typos!

Thanks guys, the university I have been speaking to about ESDM supervision confirmed today they will take us on. This is huge! And it means ESDM will be our primary approach, I will keep seeing our speech therapist and OT which are services ESDM liaise with normally anyway). I am going to keep reading the floortime books for ideas (and I have some ABA books which are helping me understand the behavioural approach, some of which is integrated into ESDM though I'm not sure how it will apply to us at this early stage).

The university is running training next month that my junior therapists will attend which will be a great help. They won't let me attend the same training which I'm not thrilled about, but they have found that paraprofessionals (like my OT students), professionals, and parents all learn best in different ways and aren't wiling to make an exception. To access professional supervision, assessment and goal setting in ESDM I am willing to make this compromise!

PDTwinMom, My girls have zero expressive language right now and it will make a huge difference to our lives once they can start to understand us, I agree that there are lots of ways we can progress on the expressive front.

That's WONDERFUL, Reesan! That must be such a relief!

My boys only had "mama" at 18 mo. I heard the next word from the guy who is furthest along at about 2. Almost 3 for my other little man. BUT - the therapy helped unlock them to the point that I could get a clear picture of what they understood, and it was so much more than I had previously thought! It can be hard to decouple receptive and expressive speech because, how can you tell what they know if they don't verbalize it? That's doubly difficult when they understand, but feel no need to comply or give any other indication of that understanding, as is often the case with ASD. I'm excited for you as you begin your journey. Each new step was wondrous for me as I finally started to see who my kids really were. Not trying to paint an overly rosy picture, moreso saying that the therapy was so immensely helpful.

What are the profiles of your girls? How do they present?

It is a huge relief, I am so excited. I have been really happy to find a great speechie and OT who are on board philosophically with the approach I want to take, and now to have this professional level of oversight for our whole program is going to really help us maximize Holly and Kate's potential. It is also just a huge wonderful coincidence of timing as this program has only just been launched (just finished a pilot program of 4 families).

Thanks for asking about how Holly and Kate present. They are very active, always on the move. Love to climb and swing and climb all over mummy and be spun and held upside down. They mainly play by mouthing, shaking, and banging things though in the last fortnight we have taught them to take themselves down an indoor slide, bounce on an indoor trampoline and throw balls down the slide. They both babbled at a normal age but lost it by 1, Holly has had two babble sounds back for a few month and Kate has just started a babble sound in the last week or so.

They've both been clapping for about two months (to themselves, not expressively). Not much eye contact or joint attention but seeing some improvement already. No sense of danger so very hard to take them anywhere (especially with a one on two ratio) and they are very moody, lots of crying. Very early risers, usually 4-5am and don't nap much during the day, which is hard on me. They are both quite expressive and Kate smiles heaps and makes lots of pleasurable open vowel sounds. Holly has been a real mummy's girl for about four months and when my husband is giving me a break she wanders around the house often babbling "mamamamama" so I think she does have some idea that I am mama.

They only eat dry crunchy foods and won't be spoon fed, basically it was this way since we started solids at six months. Most of their calories come from milk and I let them have their sippy cups and comfort toys all day as they just spend too much of the day in distress otherwise.

They are definitely both quite spirited, initially I thought it couldn't be autism because they are so warm physically with me and so expressive emotionally. Once I saw a speech therapist experienced in ASD at 16 mths and told her about all the red flags they had for autism but I didnt' think it was for those reasons, she set me straight and I got an appt with a good dev paed asap. I know we are really fortunate to have been diagnosed so young and get started straight away. When I read about ESDM I knew it was for us and the first two books I read were the parent's guide to ESDM which has just been lifechanging, and the floortime book Engaging Autism.

I think you are right on the money and that ESDM will be great for your girls. They sound like so much fun! Hard work too, I'm sure.

With those profiles, I'd bet that joint attention comes quickly. They sound so social and loving! They probably just haven't figured out yet that joint attention can be fun. My non-talker actually had better joint attention skills from the outset. Still behind his age level, but present. My other guy had none. But they both moved quickly once they understood the concept and the benefit, mostly because they were already aware of other social benefits like cuddling with mommy and daddy.

Eye contact is sometimes controversial. You may want to watch to see if there are sensory issues associated with it. My talker didn't make eye contact, but it wasn't sensory driven. It just never occurred to him to do it until the therapists taught him to. Then he realized that there was a benefit in terms of smiles, hugs, and other good-feeling things. For some kids, though, it's actually very uncomfortable and disorienting. There are probably ways to address this that I just haven't researched, but I'd be watchful for it.

Paying attention to each other. With what you've said about your girls, my non-expert opinion is that it really will come. My boys turned 3 in July, and they first started really paying attention to each other in January. They even play together now! Mostly chase games, but they do take turns. But also, parallel play is normal for typical kids fo quite a while longer, so I wouldn't worry too much about this yet.

This may sound weird, but there are some benefits to both twins being on the spectrum. Few, but they exist. Since both are going to be in therapy at the same time, you can have some part of that time be joint and work on so many things. Play skills, turn-taking, and empathy are a few. I really believe that having a partner really accelerated the process for my boys.

Oh - and the babbling is a GREAT sign!

Also, my boys are physically inclined like your girls. You can use that to your advantage by requiring them to request a tickle, throw, and etc by using a sign, or whatever means of communication you think is most appropriate. It sounds like the tumbling is highly motivational for them, so that's a great place to start with back and forth communication. We did the same.

Other things: my kids didn't take solids until 14 mo and still are really picky eaters. They both are bangers too. I expanded on their banging by singing songs to the beat while they did it. Twinkle twinkle. Mary had a little lamb, whatever. Whenever they stopped banging, I'd stop singing. After a while, they found it funny that they could control the song. It actually became a game, and they learned about how much more fun it could be when you include another person. I also banged with them. Just copied everything they were doing. They noticed and after a while started varying what they did just to see what I would do. Btw - I'm a TERRIBLE singer, but they still ended up liking the game.

I think music is a great avenue of communication for the bangers. There's a huge sensory component in the rhythm. You can use that to your advantage.

Welcome WP!

I have 2 kids on the spectrum, but they are 4 years apart in age and the younger was diagnosed first. So, not really equivalent in any way to what you are experiencing, though my daughter was first diagnosed at 20 months, so at a similar age.

She started with 20 hours of VB/ABA a week with 3 x 30 minutes of ST, 2 X 30 minutes of OT and 2 x 30 minutes of PT. We enrolled her in a nursery school that would allow her therapist to attend with her when she was just over 2. At first she only stayed for a few hours a couple of days a week, but it was gradually increased so that by the end of her 2nd year, she was going full-time, with her therapist with her for only about half of the hours. The gradual "push" into the classroom was marvelous for her. However, I think the quality/approach of the therapist makes a huge difference. The two therapists that went with her both had a fairly hands off approach, even though she was barely verbal when she started. They both had an uncanny ability to recognize exactly where she was developmentally and to let her be in situations that were just a notch ahead of where she was and to provide supports to get her to nudge up. In comparison, there was another little boy similar to her who also had a therapist with him. His therapist was like white on rice and constantly prompted him and pulled him aside throughout the day. While it is nearly impossible to say if the two of them had the same kind of profile, my daughter's therapist said that was a mistake she frequently saw...therapists intervening too much, which she felt held the kids back. By the time my daughter entered kindergarten, she was mainstreamed without an aide, was IEP-free and had only a handful of accommodations. She is now in 4th grade, remains IEP free in a mainstream classroom, and although we have only been in school for 2.5 weeks, she has not had any significant difficulties so far this year. I know from past experience that she will eventually need more help, but she has come a long way in her short 9 years of life. She was scored toward the "severe" end of the moderate-severe range of autism at baseline, btw, so significant change is possible.

Regarding ABA, when my daughter first started it, I had rather unconventional rules from an ABA perspective. They were not allowed to make her have eye contact or to extinguish her stims. She could not be forced to sit at a table or to keep her hands still. Luckily, all of her therapists were willing to adjust to these requirements, but if they would not have been willing, I would have taken them off the case. I say this, not to pass judgment on anyone else, but to say that ultimately, you are the one in charge of your kids' interventions, so if something feels uncomfortable to you, even if the therapist tells you you "have" to do it, you really don't "have" to do it. There is no one right way, nor one best way and at least for my particular child, forcing those things would have had a very bad effect on her. She did, eventually, learn to be "table ready" with "quiet hands" but I suspect that that part of her therapy took significantly longer than "normal." And they had to be flexible and teach her other things first, but in the long run, it ended up being good for her. I was happy to see that the most "traditional" of her therapists eventually started using "stim time" (spinning and bouncing, her two favorite stims) as a reinforcer for the things my daughter didn't really like to do. She even make up a silly song she sang and joined in at times. It was cute!

Best of luck to you!