Severe autism, mostly non verbal, age 5, progress very slow

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My son, age five and a half, was diagnosed with moderate/severe autism at age 3 and a half, although we suspected he was autistic at age 20 months and intervened to the best of our ability. He has been in the special ed program with the school district since age 3, and will be entering kindergarten in August. The school district has a good program for autistic kids, so we hope this will help him.

He is mostly non-verbal...he will come out with a complete sentence occasionally, and he seems to understand most of what we tell him, but for the most part he doesn't talk. He makes unusual noises constantly, including a strange clicking sound, and he sings and hums to himself.

He makes eye contact much better than he used to. But progress has been very very slow, and it is hard not to get discouraged.

Three things of particular concern as we approach school in August.

1) Potty training. We have been working on this for almost 3 years with zero progress. His pediatrician advises us to not worry about it, that he will train when he's ready, but it is still frustrating.
2) Eating. His diet consists of Doritos, cheetos, and yogurt smoothies. He absolutely refuses to eat anything else. He won't/cant' use a fork or spoon, we can't get him to focus enough to sit at the table without having to pin him down, which we won't do.
3) Respite. My wife and I are run ragged. We have no one to give us a break. Our "friends" with neurotypical children abandoned us to our fate long ago and won't babysit for us, even for a few hours. Our family doesn't live nearby, and after one negative experience, his closest aunt won't take him in for a night so we can have some alone time. Our finances have been crippled by this in any event; right now we can't afford the premium it takes to find a decent sitter who can cope with him.

I don't have any particular questions I guess. I know all the advice is to keep a positive attitude, but it is hard to do so. We love him, but the uncertainty of the future (will he be living with us when he's 30? What happens when we die?) is weighing on us, especially given his very slow progress.

Please check out the reading "playlists" section on my YouTube Channel (use vids4autistickids) for hundreds of reading/speech videos. The ones organized by letter of the alphabet are the most entertaining for a child like yours. Also, you can check out my Speech and Vocabulary Channel on YouTube (user vids4autistickids3) for a bunch of homemade speech slideshows in the uploads, hundreds of professionally made stuff in the "playlists," and some recommendations in the comments area.

Also, check out my "subscriptions" and "friends" on the Reading Channel for other completely free YouTube channels offering helpful stuff for kids needing reading and speech help.

Visual aids are so important--flashcards with both words and pictures, picture dictionaries (I love the children's reference section of Half Price Books. Amazon.com will also have these.) Alway use close captions for the hearing impaired with the TV, subtitles in English, and plenty of repetition.

Start with Babybumblebee.com and Standard Deviants ESL series if you want to buy DVDS.

Working with the child at home using visual aids generally results in improvement. How much varies by the child. Also, if the child is learning via a computer or educational DVD, you can get a little respite.

I have also used mother's helpers in the past from sittersity.com to give me a little respite or do my housework (one hates to spend one's free time doing that!).

as far as respite goes, you really need a trained nurse or someone who is familar with auties. Even if you are not religous, join a church group and ask around. You might find someone willing to help out for a lower cost or even skills barter.

In economic times like this, people need to learn to barter, and a skills barter is a very good thing. Is there something you can do in return for professional babysitting?? Are you organized? can you organize a closet or file system? Are you computer savy? can you build a web page? Are you artistic? Can you make something for a gift? Do you have any particular skill that somone can benifit from? Are you a fast worker? Can you help someone with things around the house? Can you provide maid service in return for babysitting???
Are you or your husband good at fixing things? Could you repair things in retuirn for babysitting?
Could you be a tutor for someone's child? The list is endless.

As far as communicating, when I was a kid, I did not understand much of what others said until I was taught sign language and something happened, I started understanding people. I will never forget I was watching Mcguyver reruns and I suddenly realized that I understood what was going on in the movie. Of course once I was out of my little world, I spent alot of time trying to get back into it like a puppy trying to crawl back into the womb. The world I woke up to was a very confusing frightening place with unpredictable people.
2 years later, mom took me to be tested for a full neuropsych and they concluded that my mind was like a person who just woke up from a long coma.
All this was triggered by sign language because it is a visual language so it teaches communication through other neuropathways. I also think in pictures, so a visual form of communication seemed to be the bridge of communication for how I process information

My son is 3 and although he's considered high functioning by his doctors we're still dealing with the same issues you described. Most of the parents here have children with Aspergers Syndrome but there's a sticky at the top of the parents forum for parents of children who are more profoundly affected by autism (my son falls somewhere between classic autism and PPD-NOS). I wish I could offer you advice but I'm in a similar boat.

What types of therapy has he received so far?

I want to clarify what I meant my "mother's helper." I meant basically an aid/assistant to the mom or dad who will care for the child, clean the house, run errands, etc., under the mother's direction. A mother's helper is going to be a lot cheaper than a trained person, but you will end up getting most of your respite at home or on an outing with the mother's helper and child along. You pretty much have to be always on hand to jump in and help if things are not going well.

Also, like Wreck-Gar asked, what are your current therapies?

A good autism program actually helps with this. They make no assumption that incoming students are potty trained unless/until it becomes clear they are. Since they have the children for 6 hours a day, they work on potty training too and you can coordinate with them so that you are doing the same things they do.





Oh my. I hope there is some wiggle room on the yogurt smoothies and that additional nutrients can be subtly blended in. Can liquid vitamins be blended in?

If you are already blending in liquid vitamins then yay! If not, it has to be done with extreme subtlety because you can't risk noticeably changing the taste and having him reject yogurt smoothies. Do just a single drop and let him get used to that and then make it 2 drops and then so on in very slow increments so that he doesn't notice over time that the taste has slowly, slowly changed a bit. Hopefully it's a homemade smoothie which means there is some slight variation in taste from one batch to the next anyway. If it's a commercially packaged smoothie, you have to be sneaky. Remove the smoothie from it's packaging, blend in vitamins, and then return and reseal like nothing ever happened. But you have to be very, very subtle.

Alternatively, you might be able to slowly, subtly mix in nutritional drinks (that have a dairy taste) such as Pediasure or Ensure. They will alter the consistency and make it a little more watery but if you are slow and subtle, you might eventually get him drinking a yogurt/Pediasure smoothie.

The mono-diet is for me the most distressing part of parenting an autistic child. I got lucky in that my daughter's mon-diet is tomato-sauce based. Tomato sauce is strong enough tasting that it can hide a variety of nutrients without a noticeable taste change. That's harder with a dairy product. She also grew to accept tomato sauce in a variety of formats including pizza and with additional vegetable and eventually meat chunks!! ! mixed in. Your son may in time accept yogurt in other formats or with actual chunks of fruit.

Here's another idea I just thought of when thinking about how the strong taste of tomato sauce disguised additional nutrients. Doritos and Cheetos have a pretty strong taste. Especially Doritos. They are very spicy and could probably hide some additional nutrients with their spice. So how? Maybe they could be very subtly dusted with vitamins in powdered form. I've never actually tried that but it's a worthy experiment.

Last edited by Janissy on 15 Jul 2011, 11:12 am, edited 1 time in total.

I'm really new here, but I wanted to post because my son had some similar problems.

He's almost 12 and potty trained fully 2 years ago. It was a very long road, but just like his Dr. and therapists told us, he did it when he was ready to. He spent about 3 years going to school in underwear and on a tolieting schedule and there were many accidents over that time even more at home. At some point it clicked for him. Stick with it and try to have patience and he'll get there.

My son also had a very limited diet and what seemed to work for him was a two step approach. His OT started a feeding program with him just to get him to accept food he didn't want to eat on his plate at first, then touch it, then kiss it, hold it in his mouth, etc. He actually did start eating some new foods at therapy. Once we saw progress there we decided to not pack his lunch anymore and have school be a new food place. He had to at least try everything to get the treat in the lunch. It sounds terrible, but he went from eating 3 things (pb&j, grilled cheese, and pizza) to eating salad, pineapple and burritos in 2 months. Now he eats pasta (cheesy and with red sauce), apples, bananas, grapes, grilled chicken, carrots, lunch meat, pancakes with syrup and fried fish. This is 3 yers after strting the program at school and he's still expanding.

I do have to say though that at the time he was in a private school for autistic kids so the teachers and aids we're only focused on dealing with kids on the spectrum. I'm su that made it easier for them than it would have been for a public school teacher (depending on where you are and what the classroom is like).

Whatever you decide to do just remember that it may take a long for him to make a change.

Fortunately he will take Flintstone vitamins and vitamin C tablets, and we have been able to mix DHA and vitamin B liquid supplements into his smoothies if we are careful. It is a commercial smoothie, but it is organic and low sugar, relatively healthy, vitamin D fortified. He's strong as an ox, never gets sick (knock on wood), and the doctor says he is not malnourished and is growing properly.

The potty training is a bigger issue than the food right now. We're going broke on pull-ups, lol.

I'm a stay-at-home dad actually. I'm a writer, I take care of my son during the day when my wife is at work, then I write at night. We don't get a lot of sleep here.

Therapy: the school was using some ABA with him, with no real results until he learned to wave socially a couple of months ago. He also sees a private OT. The full-day program he starts in August will incorporate more ABA.

Yay



A full-day autism program can really help with that. It sure did help with my daughter. Schools have very regimented schedules- autism programs doubly so, the kids thrive on schedules- and the school bathroom schedule did the trick for her. The school probably has some potty training tricks up their sleeve. Working with this demographic they are very used to it.

www.youtube.com/p/5B3ECF9858B7E885?

Above is a potty training playlist from my Autistic Kids free YouTube Channel. There are a number of potty training picture books and DVDs for sale in bookstores and on Amazon.com, too.

The visual aids will help teach the child how the process works. However, a potty training schedule at school and seeing others do it in the potty may be needed in order for the child to actually do it in the potty on a regular basis. (In my personal experience).

I have a couple of used computers for my kids hooked up to mine via WiFi. Computer-based learning can be a very affordable and convenient addition to other therapy.

Your insurance and/or medicaid should help with that. IMO, toilet training is much less of an issue than 2 (eating) or 3 (downtime for parents). You wouldn't want him to develop health problems due to malnutrition, or you and your wife to go insane from never having a minute of downtime.

my mom said once that if you try to potty train before a child is ready, then you are the one who is getting potty trained not him.
However I agree with the above poster....you guys need down time...please consider what I said about skill bartering for a baby sitter every so often.

Also look into local charaties. I used to volunteer at a charity called mother's day out. It was run by a local church that had a RN on staff who also volunteered. There were about 20 volunteers and about 40 kids...each volunteer had two kids to look after for 6 hours. It was alot of fun too, plus it gave parents a break once every two weeks.

This is true of my daughter, who is now 6. We had to potty train her around 4 as she was getting MRSA abscesses on her bottom and she had to be hospitalized and one was so deep it had to be surgically drained. So we did take her potty every hour, the school as well. We were fortunate that she never wet in her sleep unless she was very ill. She will sometimes go to the toilet now by herself and sometimes *gasp* even asks but we have to wipe her or she will get her undies dirty and then she ends up with a urinary tract infection.
Her speech has recently been tested at a 2 1/2 year old level but you have to take that with a grain of salt....she talks like an Autistic child. The noises you son is making is probably verbal stimming and also him testing or using his voice. My daughter sings A LOT!! ! and she also makes what we call "autistic" noises. Sometimes she can get very loud and we have taught her "quiet voice"....sometimes this works sometimes it doesnt but we are pretty accustomed to her noises and singing although very repetitive at times. Other times we can redirect her by playing a game with her or reading to her.
You may want to look into cloth diapers for your son. Here is a site that has lots of potty training accessories and the cloth diapers that look like boxer shorts. The good thing about cloth is that they can better feel that they are wet. You can also buy disposable liners that makes solid clean up easier. http://pottytrainingsolutions.com/
We bought a travel toilet seat cover from this place and it was a life saver as my daughter would only sit on her small toilet seat at home (at school they had little toilets).....she was afraid of the large hole. You have a lot of accidents (we still do) but its a process and when you have an autistic child its a LOOOONNNNNGGGG process I personally would not listen to people telling you to wait because he is already over 5. Unless it is totally stressing him out then it doesnt hurt to take him. You can also use M&Ms or other small candy, or even stickers and they have these things called Potty Watches that played a little tune every half hour and every hour ect. depending on how you set it. We had one of those and it was helpful when we first started to remind us. After a while it just became second nature to take her and it still is. We dont take her every hour anymore, we just have a sort of ESP potty thing now plus sometimes you can tell buy her body language.
I recently bought a high speed blender to get my Aspie (he is 9) who has a limited diet to eat a bit better. I actually got him to eat spinach because I put it in a smoothie....I put it in a glass that he could not see the color so he did not run in the opposite direction....He loves it. Anything you put in a smoothie he will drink as long as you throw in some yogurt, bananas and honey with it.

Just thought of something else, you might want to check out this site http://saltoftheearthweightedgear.com/
You may try getting your son to sit with a weighted lap pad....its not pinning him down its just a bit of weight to make him feel more calm and grounded. You could try using it sitting other places than the table at first and then slowly transition. Also they have what is called plush pounds which are stuffed animals with weight...personally I think these would be easier to make yourself than to pay for. Just take the stuffing out of an animal and re stuff with poly beads. You may also want to look at the Abilitations site https://store.schoolspecialtyonline.net ... site=10206
They have just about anything and everything for autistic children and people.
Hopefully you are in the US otherwise all these sites are somewhat useless for you.

Last edited by liloleme on 16 Jul 2011, 11:23 am, edited 1 time in total.

Hi ya

I am also very new here, but also have the potty training issues with my daughter (now 6) she is still not dry completely in the day and has only recently stopped soiling herself (Thank goodness) So she was still soiling and wetting when she started in Reception, its been a really rocky and embarrassing ride. The worst being the school sent her home with soiled knickers and pooh clearly visible through the plastic bag! My face was burning with humiliation that day in the playground and I went home and cried!

BUT Hurray we are getting there finally and what helped our daughter was the social story the school made for her - simple laminated pictures of the process of going to the loo. Something seemed to click and with the pictures and routine she seemed to "get it" She still has accidents out of the blue, but they are getting less. We are now in the process of making a social story to get dressed and do bathroom routine.

Hang in there! The teachers once they understood it wasn't naughtiness have been so supportive and understanding!

Each child is different and they each have their own time for everything.