Speech therapy, worth while? *See special circumstances

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First of all we are not in the USA, and local taxpayer supported services are nonexistent. Our son is four and essentially non-verbal, he currently has one communicative word which is "go" and he will take our hands and then say go and we repeat go, it basically is a catchall that means come with me. He has had other communicative words in the past, but currently this is his only one. He says words in his sleep that we have never heard when he is awake, when neighbor's barking dogs woke him and us he sat up and said "dogs" even though we have never heard that word from him while awake.

His private expensive pediatrician who went to medical school in the USA said he does appear to be autistic, but she won't diagnose it claiming she isn't qualified and it will gain us nothing. She recommended a relocation, or to get on the waiting list at the public hospital for institutional placement.

Local public school starts at age 2, and they require he be talking and be potty trained or they won't allow him to enroll, neither of which he can meet and they also allow corporal punishment which I disagree with. There is a public healthcare hospital that does autism evaluation, the waiting list to get on the waiting list is two years wait. And they offer no services, it is a waiting list to get on the list to get evaluated and be offered institutional placement for the child which of course is absolutely not going to happen on my watch.

With <ALL>that out of the way we found a local speech therapist. she says she has never had a patient with autism and did not know what is was. But says she may be able to help him, however she is extremely expensive. She said the initial evaluation is six hundred dollars for one hour, where she will determine whether she can help him or not. And follow up weekly visits are three hundred. This would be burdensome for us to the point of eating beans and rice on a good day, forget about the bad. Also she said she wants to do the evaluation and sessions in private but we can wait outside, I think this will be a absolute disaster as my son won't stay anywhere if he is out of eyesight of either of us his parents, he will just throw himself to the ground and shriek until he vomits. He won't go or stay anywhere unless one of us is with him, if he saw us leave the room he would just scream and beat on the door until he got out. But she was firm about the no parents in the room thing.

What I am wondering is if we would just be wasting our money or if this would be worthwhile, I guess I am also interested to hear other people who have gone through speech therapy for their kids.

EDIT:Forgot to add he seems to have very good receptive speech, we can talk about me going to do a grocery run while while he naps in very oblique terms and he will jump up and start assembling his clothes and my clothes. Numerous other instances show that even when we don't want him to understand what we are talking about, he does.

I don't think I would spend that kind of money for something that uncertain. I think I would do my best to research what speech therapists do, and try to replicate it myself the best I could.

My son was verbal but stingy in his expressive speech, meaning he would bring things to me instead of speaking when he could and that kind of thing. He sometimes still does this despite being a chatterbox, these days. I mention this just so you know what my own situation is so you can properly weight what I say.

My son has had ton of pragmatic issues with speech, and when he has had a good speech therapist, he has made good progress. He also once had a very bad one and it was worse than useless. Ours were through public school, at no cost to us, and so we also had no say about reassignment. We got what we got.

Based on this experience I would not pay that kind of money to someone with no experience with ASD. The speech therapist that was most effective was an older lady with tons of experience. The one that was awful was a young woman who I am guessing was fresh out of school or close to it. She made no adaptations at all for things that upset my son and was very rigid.

Based on this experience, I would say that a trained speech therapist who knows what she is doing and is flexible is the best thing. A middle of the road Ok speech teacher who understands ASD is next. I think a parent who is in tune with his/her child and educates him/herself as much as possible is next. I would put a rigid speech therapist with no experience with ASD well after that.

Disclaimer: I now homeschool and do my version of speech therapy as we go about our day.

So I'm answering this as an American speech therapist with a son with high-functioning autism AND living overseas as well.

In general, speech therapy would normally be essential for a non-verbal four-year-old. I can not emphasize that enough. As a parent, I can tell you that it's very hard to do the same things with your child that the therapists do, even when you know exactly how to do it! the relationship is completely different, and it becomes even more difficult as the child gets older. However, the ST you have spoken with is not the answer for you. I would never say that the parents can't be in the room if they would like to be, and 300/visit with someone with no autism experience is pretty steep.

It would be helpful to know where you are and where you are from. A local school with corporal punishment is NOT the place for a child with autism. It would be a DISASTER. Some of the international schools are well equipped for individualized learning, but by no means all. The one close to me has an excellent program, but this is not a given, and it's very expensive. I hope by "institutional placement" the doctor does not mean living away from you? That would be so wrong that I would be shocked!

If you are from England or the U.S., I would say, go back! Harsh, I know, but both countries are ahead of most others in autism education (I can't speak for Australia, OZ or Canada, but in my experience the English speaking countries are the ones pushing the envelope with research and appropriate schooling.)

Please, please PM me if you want more information. The difference between the right setting and the wrong one for our kids can be HUGE, and although I don't know your situation, relocating might be the best solution.

So I'm answering this as an American speech therapist with a son with high-functioning autism AND living overseas as well.

In general, speech therapy would normally be essential for a non-verbal four-year-old. I can not emphasize that enough. As a parent, I can tell you that it's very hard to do the same things with your child that the therapists do, even when you know exactly how to do it! the relationship is completely different, and it becomes even more difficult as the child gets older. However, the ST you have spoken with is not the answer for you. I would never say that the parents can't be in the room if they would like to be, and 300/visit with someone with no autism experience is pretty steep.

It would be helpful to know where you are and where you are from. A local school with corporal punishment is NOT the place for a child with autism. It would be a DISASTER. Some of the international schools are well equipped for individualized learning, but by no means all. The one close to me has an excellent program, but this is not a given, and it's very expensive. I hope by "institutional placement" the doctor does not mean living away from you? That would be so wrong that I would be shocked!

If you are from England or the U.S., I would say, go back! Harsh, I know, but both countries are ahead of most others in autism education (I can't speak for Australia, OZ or Canada, but in my experience the English speaking countries are the ones pushing the envelope with research and appropriate schooling.)

Please, please PM me if you want more information. The difference between the right setting and the wrong one for our kids can be HUGE, and although I don't know your situation, relocating might be the best solution.

As you have the money to consider this, my suggestion is to research where a good center is and use the money to travel for a proper diagnosis.

Very good receptive language with no expressive language might be something other than autism, I am wondering about apraxia.

I agree with February. If you can consider moving, think about it. If not, YOU may be a better option than the very expensive therapist, perhaps with the problem identified you could educate yourself. Then if you aren't able to implement the interventions, perhaps you could direct a motivated and kind older teenager or adult in what you learn is needed. But obviously an experienced and knowledgeable professional would be best.

You need to try to move if possible. Either to better part of the country you are in or to a different country all together. I know that is not the answer you want, nor is it easy, but that is it. An xpensive speech therapist with no autism experience is not worth it. How can this person not have heard of autism? Where are you?

Hey there- where are you? I'm curious.
We are also overseas, no public services, and crappy and expensive private services. Better sounding than what you've got though! We can't enroll my son in public school here (expats not allowed and I wouldn't if we were!) although my husband's company will pay the steep fees (to a limit) for the international schools. The international schools don't really have special ed or any support for students with specials needs. We were told that to send my son to school, we would need to find and pay for a (documented and qualified) one-to-one assistant for him. And to do that, we'd have to import one (pay for their visa, housing, insurance and salary) from the west. So he's at home with me for now and we've experimented with speech therapy twice (first teacher had a thick accent, worsened my son's echolalia, and had no idea that my son was screwing around with her in the sessions; the second wasn't much better- both we about $100/hr and nowhere near worth it, or affordable for us). We've tried occupational therapy too- his "therapist" ran some strange drills with him (same exact circuit I saw her do with a boy with down's syndrome before my son's session) and had zero rapport; when I asked her about toilet training issue or sensory integration she basically had NO idea. That was $250 for an hour. We went once.

I wouldn't bother with ANY of what you described. Sounds like more harm than good. We are still figuring things out here- and I really don't know if I can continue to be the primary caregiver/teacher/therapist for my son forever, but I've all we got until something is figured out. Yeah- everyone says, just go HOME. But we are here for a reason- a job, making a living, surviving. Economic refugees, if you will, although we live very well. If we returned to Canada we'd have no job prospects and even there, there'd be no guarantee of useful therapies or a fitting school situation for my son. So we stay here where at least we can feed the family and not worry about having a roof over our heads. It's a tough situation and stressful. I hate it when people say that we should "just relocate"- it's not that simple, I wish it were.

I've read a few of your posts before- my son is also four if you remember. Since we discovered he was on the spectrum over 2 years ago, I've done a lot of things at home that have been helpful. I started with speech since my son's echolalia was one of his earliest and biggest symptoms/autistic behaviours. One of the first things I did that was so very helpful is to look at the Hanen Centre website as well as order their books and DVDs (WAY cheaper than speech therapy, and soooooo much more helpful). I also emailed Fern Sussman, a brilliant woman who wrote the books More Than Words and Talkability- she can tell you if there is a Hanen-trained speech therapist in your country or region. I had email consults with one she recommended and it was sooo helpful (and free!). Anyway, I really recommend More Than Words for a mostly non-verbal kid. I went through that one and it had great stuff, but Talkability helped my verbal echolaliac a bit more.
What have you tried with your son so far? What has worked?
Also... Stanley Greenspan's Floortime was a good start with my boy too. I think that kind of thing would be really good for kids who aren't quite talking yet.

I really do believe that you, as a parent, are definitely an expert on your son. And if you give yourself the right tools and knowledge, you can do A LOT. I've done a lot with my son and he has come a long way (especially with speech). We are struggling now, mostly with behaviour issues that I just don't know how to handle. So I won't pretend that it's a prefect situation or that I feel like I even know what I'm doing most of the time. It's really, really, extremely hard. I do feel really trapped in our life situation living abroad, and wonder if things will turn out alright for my son and if I am doing the right things for him, if it's enough. I drive myself completely insane.
How do you get through? Are you staying at home with your son? Why do you live abroad?
Do you speak the local language?

I do not think this particular therapist will do anything helpful for your son, so no I don't think this is worth the money. I don't even think it would be worth it if it were free. However, it does sound like you son needs significant intervention and that it should not be delayed. That may mean some hard choices for you. I hope that you can find better options.

Just to address the topic of better receptive than expressive language -- if the child has apraxia, the language will still be there, it just won't "come out" correctly. They will be trying to communicate, though.

I agree with the person who said that an accurate diagnosis is important. If you can afford to go to another country for this, I would highly recommend it. There are so many good child development centers around the world -- probably 30 in the U.S. alone. Maybe it isn't autism, who knows -- it's hard to diagnose over the internet -- but there is definitely something up with a 4-year-old who is non-verbal.

Most international schools are not at all equipped for special needs kids, but some have outstanding programs. I've also seen families bring over young therapists from the U.S. to work with their kids full-time, accompanying them to school, if needed. This is super expensive, of course, but might work for you.

Try enrolling your son in a cheap ESL or your language as a second language program.
I had good receptive and no expressive when I was his age, and I learned fluent speech through ESL.

I would agree that a professional speech therapist/assessment is a good idea: we got so much information when our very verbal son was assessed.

Before I spent the kind of money you're talking about, though, I would want to know EXACTLY what you are paying for. What kind of assessments would she do? (there are all kinds of places to look up the tools used for assessments, and I'd bet February could tell you which is what if you post them here.) What EXACTLY is she going to do during speech therapy? If she's never dealt with autism before, can she give you a discount based on her lack of expertise, or refer you to a private therapist who DOES specialize in autism and other expressive language delays?

ESL might be a good option, but I'd agree with February that a trained professional at this age is very important. Can you go elsewhere for the assessment and recommendations for therapy and then bring those back to where you live?

If you can let us know what country you are in, there might be posters here who can help you navigate it better. It's a big WrongPlanet, I'm always amazed at how far the reach is here.

Another option - if you are a US ex-pat and near a military base, IDEA covers military children. Because of this (whether you are military or not) there might be services you can access there, or at least referrals http://www.ncld.org/parents-child-disab ... tary-child

I found speech therapy to be the best service my son received, BUT that was largely because here speech therapists have really jumped into autism and know how to help ASD kids with all the issues common to ASD as the children mature, including pragmatic speech, understanding language nuance and metaphors and phrases, and reciprocal speech / social skills.

If you can't move to a country with better services and education for your child, I would suggest you become his teacher and devote your energy to him full time (or as near to full time as circumstances will allow). Read and learn everything you can, and then do your best to apply it. Follow your instincts, too. Remember that families like Temple Gradin's were successfully figuring out how to help their children before the experts had, so a smart and dedicated parent can do a lot working with their child one on one. Just ... well, it is going to be intense and it is going to be exhausting, and you will have to learn to ignore pretty much everyone around you who will think you've lost your mind and are doing the wrong thing. Overall, I think this will prove to be a better investment than an expensive speech therapist who hasn't trained on autism issues, given that it sounds unlikely to me that your family has the resources to do both.

Just for your information, I had a friend whose son did not talk until he was 4. He spoke in his sleep, however, and his receptive speech was on track. Then one day he simply started talking, full sentences. Their joke was always that he was a perfectionist, just waiting until he knew he had it perfect. I once read from another family whose child told the mom, after he started talking out loud, that he had always thought he was talking and wondered why no one seemed to hear him; I guess he couldn't connect that it had to come from his larynx. Basically, I want you to know that well, you never know.

Also, I don't think having an official diagnosis is as important in your case as simply doing the best by your child that you can. If working with him on the assumption that he is autistic seems to result in the most improvements, and allows your child to be his happiest, then assume he is autistic. If it doesn't, then assume something else might be going on and keep searching. First and foremost is knowing your one unique child and letting him be your guide.

I would second the suggestion to check out Hanen.org. They have programs around the world, and their book It Takes Two To Talk is full of things you can do at home to get communication going. (More Than Words would be the follow-on program).

There is an Indian woman named Soma Mukhopadhyay who taught her non-verbal autistic son to communicate through pointing to letters and then writing. She now lives in Houston and has a center teaching her methods. I've read her son's autobiography, it might give you some ideas: How Can I Talk If My Lips Don't Move?: Inside My Autistic Mind by Tito Rajarshi Mukhopadhyay (Apr 1, 2011)

I don't know anything about the rapid prompting method she promotes at her center, but she does have books about it available on amazon.

I would not pay that much money for a speech teacher who did not allow me to be in the room, especially one who has no ASD experience.

Please stay away from RPM.
It is unproven $$$ method that provides income for creator and ??? for autistic children.

Do it YOURSELF. Forget it. Some of these therapist really don't know what they are doing and she has already told you pretty much this same thing.

I HIGHLY recommend reading the Temple Gradin's book "The Way I See it". I also highly recommend watching the movie "Son-Rise", which is available on Amazon Prime for free or you can purchase a DVD.

My son has taken speech therapy and his therapist has been great, however, I do have to say that there are many who don't know and even with her there are certain ways they teach which I do NOT believe truly sink in for a child on the spectrum.

My son was diagnosed at age 5, his verbal skills were those of a 1yr old, he is now a 13yr old, talkative, fun, social kid with some little quirks. I mostly did EVERYTHING these books discuss and read on wrongplanet forums constantly to help him. I had not read the Temple Gradin book until about a month ago and was not aware of the Son-Rise method until the last few days. Everything I did was mostly because of this wrongplanet website and talking to people here.

PS to get my son to learn new words I mostly printed out pictures with names of items from the internet?I would put about 10 pictures on a sheet of paper and he and I would go around the house saying the word and looking for the items. It was a fun game and he learned a lot.

I would say that my daughter's speech therapist did not help her very much at all. I would feel very leery about spending so much money on a SLP who had no experience with autism. Working with someone with autism is very different than someone with a speech impediment or aphasia. Having admitted she had no experience, I find it ethically questionable that she would even charge her regular fees.

Anyway, what helped my daughter the most was Verbal Behavior therapy. Looking back, it was as if my daughter had no understanding or appreciation for the function of speech, so she didn't develop it (even after she became verbal, on more than one occasion she indicated believing that I knew what she was thinking without her saying anything). VB helped her understand the purpose. Once she got that, her speech development was pretty rapid.

My son's first word was go, too!

Edited to add: her speech therapist did help with things other than her speech development. She bit her tongue to the point of bleeding almost every time she ate and her speech therapist did great exercises with her that helped her "find" her tongue in her mouth so she stopped biting it all the time. She also corrected some feeding issues she was having. So she did help her, just not with speech development.