Xpost for those with autistic kids or those on the spectrum...

[Peela]

I would appreciate to know what therapies/approaches have helped the most.

 

My almost 3yo nephew was diagnosed autistic about a year ago. I dont see him often but today I did. He is a gorgeous bundle of energy. He walks on his toes. He doesn't make eye contact except ocasionally for a couple of seconds. He doesn't speak although he makes many sounds. I watched his parents trying to engage him a lot...they were so patient but I could tell they were struggling. The mother is quite young- only 21 I think. The father is my BIL.

They have asked me if I know anything that can help them and they are coming over during the week for a visit. They said they are finding it difficult to get useful information or therapies. So, they are reaching out...and even though it is obviously not an area I am experienced in....I would like to help them however I can.

 

Is there anything that has really helped, or anything you know now you wish you knew then? I am getting that this kid is not on the extremely high functioning end of things...I couldnt tell before (when I saw him briefly at family gatherings)that there were issues but now it is obvious to me, especially in how the parents talk to him- not quite the same as to a "normal" 3yo. Always trying to engage him, get him to connect.

 

My SIL is severely autistic so I think they have a lot of concern, but she had many brain seizures which I don't think he has.

 

thanks

[PeterPan]

Peela, you might look at http://www.halo-soma.org and Rapid Prompting. A lady I know has used it with great success. She's also now going back and getting PROMPT, because her ds11 still cannot speak.

[Misty]

DAN protocol nearly recovered my children from their ASD. They were very high-functioning to begin with though. There is a lot that can be done for your nephew. You just have to really dig in and research. Have they considered the GFCF diet and all that goes along with that?

 

Look for Dr. Natasha McBride's YouTube videos on "Gut & Psychology Syndrome". She is a fabulous Dr. and mother who completely recovered her own son from autism.

[sbgrace]

RDI (Relationship Development Intervention) has been wonderful for my son. I think this is their main link. http://www.rdiconnect.com/pages/our-programs.aspx If it's not doable or available in their area floortime is something that can be learned on their own with purchased materials and will help them engage him and help them. I like these sort of developmental based therapies.

 

I think those are good for any spectrum child. Other things will greatly help specific kids and not others in my experience (in our home and with lots of online participation). Example: I think a lot of kids benefit from something biomedical but "what" varies. My child had no response to gfcf or any kind of gut work that the previous poster found so helpful. Actually, he declined because the special diets weren't good for his actual underlying issues. However, he had stunning response to treating an underlying metabolic issues and other kids have similar experiences (but only those where metabolics are part of their autism picture). So the causes of autism vary a lot and therefore what a child does or doesn't respond to in the biomedical area varies as well. A good doctor may help guide treatment but a lot of them have "pet" causes that they tend to see in every child unfortunately. Dr. Amy Yasko's protocol tries to address a range of things. I think she's right on in some areas and others I'm not at all sure. Also, it's expensive and for many an extremely long process with little benefit.

 

Some kids can benefit a lot from working on sensory issues with occupational therapy. My child benefited from vision therapy but he had major issues in that area. Another child would have no benefit.

 

The two things I mentioned initially (either one) will help them learn to engage and connect. As I said either would help nearly any spectrum child. Both are very good, for example, with emphasizing that speech comes after discovering communication foundations. In normal development kids are communicating (nonverbally--head shakes, pointing, shrugging shoulders, facially (expressions-including reading others), body posture, sound intonation, etc.) long before they say their first real word. In these developmental approaches the thought is you focus on that foundation so communication makes sense (and after all this is much of our communication even after speaking) before the speech naturally comes in place. In fact, I know RDI says it's easier often to make progress with a child who hasn't learned to rely on verbal exclusively without those important things underlying. Those things are addressed first in any case. I don't know if any of this is making sense. But the lack of speech is less of a deficit than the lack of nonverbals and understanding communication at that foundational level. Mute people can function and communicate very well. Spectrum kids can be extremely verbal and unable to communicate and most of them have major issues in communication that affect them in life in major ways though the vast majority of spectrum children talk.

Edited December 13, 2010 by sbgrace

[PeterPan]

But the lack of speech is less of a deficit than the lack of nonverbals and understanding communication at that foundational level. Mute people can function and communicate very well. Spectrum kids can be extremely verbal and unable to communicate and most of them have major issues in communication that affect them in life in major ways though the vast majority of spectrum children talk.

 

The child might not see it that way. Like I said, my acquaintance friend's ds is 11, and although he can communicate quite well, he wants to SPEAK. Some speech therapies like PROMPT will look at the child from all dimensions and use the speech time to work on those other skills, so that it doesn't have to be one or the other.

 

Not even sure if that applies to the op's situation or not, mercy. I'm probably just being touchy because my own ds is apraxic and not likely to learn to speak (or be intelligible) without therapy. Not disagreeing with the previous poster's rec to do the non-verbal stuff.

Edited December 13, 2010 by OhElizabeth

[Ibbygirl]

If he's a toe walker he might be seeking sensory imput. Occupational therapy and a sensory diet will help with that. They might also want to look into weighted vests to give him sensory imput and also help keep his feet on the floor. Speech therapy is great too. I haven't done RDI (very expensive) but I have heard good things about it. I know for us, my son (9 almost 10) sounds a lot like the little boy you described. We couldn't afford the more expensive therapies but what we could get (PT, OT & ST) helped him. Also getting down on the floor and just playing with him and trying to engage him helped him connect with us too. Now he seeks us out to play even though he still doesn't speak. I also would give him lots of massages (still do) and just lots of sensory imput all the time. One word of caution about the toe walking. I don't want to frighten anyone, but you really need to try to get that boys feet on the floor. My son is a toe walker too and has been since he's been walking. He needs surgery now for his legs because of the years of toe walking has shortened his tendons. A steady sensory diet should help if the toe walking is a sensory "seeking" behavior and maybe a weighted vest too. Good luck.

[heart'sjoy]

We're just starting this journey too. I can't really comment on RDI's effectiveness. Effectiveness for me is whether my ds will be able to live independently, hold a job, marry, etc.,

 

 

I've read The RDI Book (20$). It's at the main website for RDI on a previous post. We've started on the parent training. It's slow going because 99% is retraining dh and I:).

 

The biggest piece of info I've gained from the research at Carnegie- Mellon (sp?) by Dr. Justin is that all autistic persons regardless of speech or IQ have deficits in the interconnecting portion of the brain as seen on functional MRIs taken during problem solving tasks and compared with non autistic people. RDI focuses on skills in this part of the brain, by breaking complex skills into smaller bite size chunks. There are more than 900 objectives. I've looked at the objectives that most 2 year olds can do fluently and I see where my 9 year old has plenty of ground to cover even though school wise he's on track and to most casual observers he appears normal.

 

I am already seeing some small changes. My ds is coming to dh and I and asking for Daddy time. Giving a lot more hugs and Yeah! starting to look at me when he's really needing an answer from me to solve a problem.

 

It's distressing that there are no long term studies as to which therapies actually help children be functioning independent adults. If I were evaluating cancer therapies for my child I would decide based on which therapy would allow for the best long-term functioning.

 

:grouphug:It is tough decision making for parents with so little actual research to base decisions on.

[PeterPan]

 

http://www.skychairs.com/ Our OT does the weighted vest thing with dd at every session and puts her in a swing from this place. I keep trying to convince dh I need one in my basement.

[Peela]

thanks everyone...I am too busy right now to respond individually but I really appreciate the replies...I will come and research the info you have shared as soon as I can...thanks again

[sbgrace]

The child might not see it that way. Like I said, my acquaintance friend's ds is 11, and although he can communicate quite well, he wants to SPEAK. Some speech therapies like PROMPT will look at the child from all dimensions and use the speech time to work on those other skills, so that it doesn't have to be one or the other.

 

Not even sure if that applies to the op's situation or not, mercy. I'm probably just being touchy because my own ds is apraxic and not likely to learn to speak (or be intelligible) without therapy. Not disagreeing with the previous poster's rec to do the non-verbal stuff.

 

:grouphug::grouphug: I can see why you'd feel touchy. I don't know how this will come across but apraxia is a completely different thing that autism (as I know you know). So an apraxic child needs very intense therapy, hopefully from someone who knows apraxia in and out, specifically to help him/her speak. An apraxic child, if there is nothing else going on developmentally, will be able to communicate nonverbally for example. They understand communication, can "read" their partner, "get" the back and forth. They are missing the talking piece in a major way. So they need that addressed. And the lack of speech would be very frustrating.

 

The typical spectrum child (verbal or not) has significant issues in communication. A person can't be diagnosed as autistic without significant issues with communication. So it would be highly/extremely unusual to have a child on the spectrum who communicates quite well except for lack of speech. In fact, I don't think it's possible because of what autism means. The average spectrum child who is talking isn't doing things communication wise that 6 month old babies do particularly in terms of referencing. There are lots of spectrum kids who talk well but can't pick up nonverbally when their partner is uninterested or are taken advantage of us a teen or adult because they can't tell when when a person's motives don't match their words. These are the things I worry about in my son.

 

When my boys were, say, 12 months or so neither was talking yet. But my child without autism was nodding yes/no, shrugging his shoulders and making a face to show uncertainty, pointing to show me things of interest while looking to me to see if I saw it, looking to me to see if things were safe with a look of expectancy (and could read my face for alarm or it's ok or of course a head nod or smile). My spectrum child was doing none of that. He started talking around 14 months. He still wasn't doing any any of that except pointing. While he's doing it all now it took work on our part--particularly for him to realize it was helpful to reference (look at, take in reactions of) your partner for information and use what is gathered. He was missing communication. So spectrum kids need a lot that has nothing to do with autism. An autistic child could have apraxia of speech and autism. You'd address them concurrently in that case. A competent evaluator will be able to tell (from mouth motor movement, sounds, etc.) whether that is the case I would suspect. In most cases a spectrum child who isn't talking isn't talking because of the autism rather than another simultaneous condition. In all spectrum cases I would say the underlying needs to be addressed. You could try to do both but in my experience the nonverbals and etc. are so much more foreign for a spectrum child that the verbal will crowd out the development of those important areas. And in the developmental approaches (RDI, floortime/DIR) they come at it from addressing things in the order they naturally occur in development. So, unless there is something like apraxia of speech, I agree with the developmental approaches that focus on first things first. Then when speech comes in place it's a piece of the picture. My son was verbal long before he had those other things in place. It's been harder to get them in place because he had become so reliant on speech for all of communication. He still falls into those patterns.

Edited December 13, 2010 by sbgrace

[hsbaby]

I guess I am in the minority here. My dd13, dx with high functioning Autism, has tried every therapy available. We have done the speech, OT, social skills groups, GFCF diet, DAN protocol, a wide variety of supplements, medication, seen psychologists and psychiatrists, neurologists and developmental pediatricians..... I could go on and on. None have greatly improved her overall functioning. This is not to say she hasn't improved in many areas over time, she has. But none if the aforementioned therapies led me to say "Wow, I can see a huge difference in her". I have now given up on restrictive diets, therapies, and large amounts of supplements. I feel I have finally come to terms with who she is and am no longer exhausting every avenue to "fix" her. She is perfect as is:) That said, I wouldn't do it differently. I have seen many of the things I have mentioned help other kids greatly improve. I would never deter a parent from exploring every avenue. I have and, though none of it proved to make much difference, I will never worry that I let her down because I failed to try something.

[Peela]

I guess I am in the minority here. My dd13, dx with high functioning Autism, has tried every therapy available. We have done the speech, OT, social skills groups, GFCF diet, DAN protocol, a wide variety of supplements, medication, seen psychologists and psychiatrists, neurologists and developmental pediatricians..... I could go on and on. None have greatly improved her overall functioning. This is not to say she hasn't improved in many areas over time, she has. But none if the aforementioned therapies led me to say "Wow, I can see a huge difference in her". I have now given up on restrictive diets, therapies, and large amounts of supplements. I feel I have finally come to terms with who she is and am no longer exhausting every avenue to "fix" her. She is perfect as is:) That said, I wouldn't do it differently. I have seen many of the things I have mentioned help other kids greatly improve. I would never deter a parent from exploring every avenue. I have and, though none of it proved to make much difference, I will never worry that I let her down because I failed to try something.

 

Yes....thankyou for your perspective too. I am not sure that the parents of my nephew have high hopes- I think they more in a silent despair, actually, and a bit lost with it all. But as you say....at least you tried and now you can just accept and relax and there is a freedom in that...wheras if you hadn't tried anything, you might always wonder. My nephew is 3...I am sure this is a good time to try things.

[chiguirre]

The most common therapy for autism is Applied Behavioral Analysis. It can be done by therapists that work in the child's home or at a center. Recently, insurance companies in various US states were required to cover the cost of this therapy by state insurance commissions or state legislation because of the amount of research that proves its efficacy. I'm sure it's available in Australia since it's even reached Venezuela, but the parents will have to find out who offers it. Sometimes schools provide ABA and sometimes it's a medical service. I'd also recommend giving the biomedical treatments a try. They didn't help either of my sons, but at least I don't have to wonder about them, which is a great guilt reducer.

[Guest Mak_Fogs]

You said your ds is verbal, right?I was under the assumption and I could be totally wrong here that the iPad was being used mostly for nonverbal and low-verbal children to facilitate their communication. Most of the apps you will find for autistic children specifically are for communication in the form of pictures that the child can touch and the iPad will speak that word for them.I am just wondering if the iPad would be exactly what you are looking for with your ds.What are you wanting to accomplish with it for your ds? Have you talked to your dss speech therapist about it and whether it is a good tool for him?I am just thinking that if he is already verbal, you will be spending a lot of money for not a lot in return.