RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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Hi, I dropped off because I did get too uncomfortable to share the problems we were/are dealing with. I think there were some issues with how the site was being run at the time (and may well still be) that rubbed me the wrong way too which didn’t help at all. I also developed a new “special interest” around that time that sort of took over all of my free time and kept my mind off my other problems ... as a result I’m now an editor/moderator for a couple websites related to my special interest which keeps me busy. My son is in a mainstream class now with other kids who have IEPs and with two teachers. We have a lot of things we still need to work on ... but he’s come a long way.

Hello. So good to hear your son is in a mainstream class. It's quite astonishing the improvements some kids make. What kind of things have you done to help your son? Any specific thing you did that pushed him on a level? If I recall correctly you have autism as well?

We're about 6 months into our autism journey and it's become clear one side of my family is autistic. Found out by accident that my second cousin has a kid with Asperger. Connecting link is my father - who is without a doubt a total aspie. I have a lot of traits myself, and I struggle with a lot of social things - however, I don't feel like I'm close to the struggles that other aspies (including my dad) has, so I'm keeping my status as NT though I feel like a hybrid. My boy is right now in the process of PECS. He's learned how to use it quite fast and he's also showing he's in possession of a big vocabulary as he's able to point out things in books that I ask of him to point at (ABA). He's bilingual.

When my son started talking instead of the usual “Mom, Dad, cookie” it was a lot of letters and numbers, then colors and shapes ... so I tried to give meaning to some of it. I decorated a bunch of big empty coffee cans in different colors with numbers and filled them with toys so when he started screaming a number at me I could give it some sort of meaning ... “Oh, five? You want the yellow number five can? That’s magnets. Purple six? Toy cars. Number 2? That’s play food. 13? Crayons.” And so on. He didn’t sleep well and was up half the night most nights, so for my sanity I let him watch TV in his room with a lot of educational kid’s shows including some videos that taught English as a second language. I read to him every night and still do. That’s probably a repeat of things I’ve already mentioned in this thread. More recently (within the last year) we signed him up for private swimming lessons. I still was washing his hair for him and he had major problems with getting his face and ears wet. I had been trying every summer to teach him to swim with no success. The private lessons in a heated pool with shallow water worked and he has started to learn to swim. He can wash his own hair now. I wish he had been able to start the lessons sooner. They were expensive though and for financial reasons we had to stop before he completed the course, I’m hoping to get him back in a class by February.

My son repeated kindergarten so being a year older has helped him keep up with his peers and fit in more since he often acts young for his age. To keep him active and socializing with his peers we signed him up for a baseball team that’s made up of all kids with various challenges - they don’t really keep score or play against other teams. It was a little frustrating for him though because he’s in a mainstream class he doesn’t get why he wasn’t in regular Little League, some of his behavioral challanges don’t make that a good fit though.

That’s a great sign that your son is effectively using PECS and understands a lot of words in two languages. Coincidentally my New Year’s resolution a few years ago was to learn a second language, I tried and failed miserably a few times to learn Spanish so I decided to try one that would be easier for me so I picked one that some of my ancestors spoke even though I have no practical reason for learning it ... Swedish. I told myself after a year of Swedish on Duolingo I’d switch to Spanish ... closing in on three years of Swedish - still a lot to learn but no sign of stopping, still no Spanish .

I meet the diagnostic criteria for autism but like a lot of girls I think I flew under the radar and was never diagnosed though I may seek a diagnosis in the future.

I have understood that creativity is one thing needed when trying to help an autistic child. We also need to use the TV/Ipad as tools to keep our boy busy so that we can breath for a few minutes during the day. I don't promote TV/iPad but it's been more of that stuff now that he's able to PECS it. I can only imagine what bad sleep must be like. My boy is not having that typical autistic problem with sleep - actually he likes sleeping and does it like a stone. He's also a big eater. His biggest problems lays within the social area. He's just not willing to engage with other kids with the exception if they're doing stuff he likes and feels comfortable with. He's very comfortable with playing with others at a table for some reason. Diagnosed with level 2 at 27 months of age. Likes tickling and don't mind engaging with us parents but can get a bit irritated if bothered when doing his own stuff like riding in the car.

Cool to hear you're partly swedish. Definitely a reason to try and learn our language. I believe it's one of the simples languages you can learn as an english speaker. Both languages share a lot of words and have the same foundation. It's only the latin in english that separates them. I have no talent for learning new languages but I managed to pick up a lot of english as a child because I loved watching series like the Dynasty and the love boat, series that were already old by the time I watched them in the early 90s. I can probably pass as a native speaker of british english when I find the rhythm in the melody. It's the grammar and words that sometimes mess it up for me. American english is a lot tougher to me because it has such a special melody which sounds extremely good when it's spoken by the natives. But yeah, I know what you mean with giving up on a language. You start a youtube clip with some ambitions of getting started, and after 15 minutes you're pretty much done with it.

Very interesting to hear about your self diagnosis. Would you like to share some of the traits you have? I understand you have special interests. What about social situations?
To me autism is new. I found out what it was in april 2018 and it started to explain a lot of things to me. I've always had a feeling of not knowing how to behave in a social situation. Sitting at a table with someone else ... jesus I just don't know what I'm suppose to talk about. I tried every single strategy out there. Being quiet, being funny, being boring, being normal. I always end up feeling like I want to leave. I think I started to blame myself in my teens for not being able to socialize. I try to listen to people and what they are talking about but I just can't find that magic key which makes conversation going. I've done online tests and I end up in the "danger area". My father is most likely autistic because he's got serious social issues. My mother is extremely allistic and that probably balanced me and my siblings up a bit. We were all extremely horrible children and the ADHD kids of today don't even come close to matching our energy levels They did test my youngest brother, who is 11 years younger than me, for asperger but they never completed the test as my mother got annoyed and tired of all the questions and just left in the middle of everything

Another thing that I have is this attention problem. It usually happens when I need to listen and my mind starts daydreaming and I'm gone for a couple of seconds, and when I come back I haven't heard a single word even though I was listening for a while. Same thing applies to my internal reading voice, so I can sit reading a book without actually listening to what I'm reading at times. The special interests are also there like video games and music. I never learned to snowboard like every other kid in school because I was fixated on music. I wouldn't say I have synesthesia though there is something that goes on in my mind when I play music as I can see blocks of chords. I learned how to play both piano and guitar on my own, there were no youtube videos or internet to help out, I did it all by just listning and repeating. I was told to quit the piano lessons by my teacher on my 3rd session because I didn't seem to care enough - great stuff! I never liked sitting playing piano with her in the first place.

All in all I just don't know where I am but there are traits in me and having an autistic son only makes it more likely that I'm in the zone. It's just that the autism my boy has got is something serious and not just a "feeling" of being awkward. At the moment I'm on some anti depressives but the pressure in my chest is horrendous, almost like a constant panic attack. I would really love to see my son mainstreamed like yours. It's just so hard to imagine it right now even though he shows some real signs of being bright, but then again every parent says so about their kids I'm just happy things are moving along as for now. Funny part that with your kid not understanding why he's not in the regular league

My son definitely watches too much mindless junk on the internet now. I'm always kicking him off and his father lets him back on. When he does watch something decent/educational he expects me to watch it with him and kind of holds me hostage. "Are you watching Mom? Mom, Mom, Mom, are you watching? Look!! If you're not going to watch it I'm going to watch something else..."

I'm not sure how old my son was before he started really playing with other children as opposed to mostly just doing his own thing next to other playing kids but he was probably around 4 or 5.

I had an inkling I was on the spectrum when I saw a video about autism in middle school. I think it was shown to the class for public awareness... I related to it a little too much but figured my traits were so mild I didn't warrant a diagnosis and never talked about it but I always paid attention when I saw anything about it in the news. I taught myself to read at an early age and had a reading comprehension well above my grade level. I had trouble making friends, l spent a lot of time playing video games (which I don't think was as typical a hobby for girls in the 1980's as it is today), drawing, reading fantasy books, playing with stuffed animals, I played the flute. I had a very vivid imagination and pretty much lived in it. My other interests as a kid were evolution, and ancient history - other kids didn't want to talk about that! I toe walked and would bite my lip until it bled and would rip off my fingernails - as an adult to stop picking at my fingers I started shaking/flapping my hands in a controlled manner which might just come across as fidgeting, I'm short so no one notices the toe walking either it somehow comes off as normal for me. I used to spin in circles to the point where I'd puke. My grades often went to extremes in both directions, A in geometry F in algebra, A in biology, F in chemistry, A in creative writing, F in grammar ... I really would have benefited from more help in my study habits. With some exceptions I struggle to look people in the eye, I look at the spot between someone's eyebrows and as a result I'm somewhat "face-blind", if I've only met someone a few times before there is a good chance I won't recognize them in a different setting. It's embarrassing to have people know who I am but I don't remember them, it comes off as insulting for them. I can fake social adequacy but it exhausts me. When I find a craft project I enjoy, instead of just making a few I'll often make hundreds of a thing. I think the most crippling thing about me is that I can't drive. I hired someone to teach me when I was 20, I somehow managed to get a license and a car but never really got the hang of it. I could never drive my own car to the gas station. I took it to work and back but that was only a very short distance. Whenever there was a problem with it I had to get someone else to take it to the shop, or the gas station. I can't keep directions in my head, I have a very poor sense of space around the car and feel like everything is going to hit me even as a passenger, lights blind me at night, it took all my mental strength not to space out. I haven't worked since my son was born - 10 years, and I don't have a social life outside of family, facebook (which I'm barely active on), and my partner's friends. He is a musician and more social than me, I'd never get out if it weren't for him. I may need to get a diagnosis for help in dealing with anxiety at least, I can't even pick up the phone to schedule a doctor's appointment for myself. I can only make myself do it if it's for my son. I was born with some birth defects/anomalies that are more common with people on the spectrum - internal things - so because I looked OK on the outside I suffered with it undiagnosed for a long time, primarily choanal atresia which is related to cleft lip/palate.

My partner also struggles with anxiety, depression, panic attacks, and some heart issues he takes medication for. I hope you find some effective relief for it I know how awful it is.

If your son is reading PECs in two languages and seems to have a big vocabulary and is only 2 1/2 he sounds genuinely bright to me, I don't think that's just you being a proud Dad.

Yes, it's quite impressive the way they manage to come up with all this diarrhea on youtube. I've only seen some glimpses of it when my sisters little daughter is hovering the channels. It's astonishing the amount of time they spend watching "shows" like 'the youtube family', kids unwrapping toys etc

OK, it's quite clear from reading your post you've got some serious issues I find it quite funny to read about all these weaknesses as they are so innocently cute. I don't have a social life outside my family either. Sometimes I wish I had, but most of the times it don't bother me at all. It's mostly when my wife mentions that she wish we had more of a social life that I start feeling bad about it. I was also in the video gaming era of the 80's and I can safely say it was not something girls were into. I'm sure you'll agree that it used to be embarrassing saying you'd be using the internet. That has certainly changed today. Either way I just find it interesting hearing about both strengths and weaknesses and funny special interests. You seem to be quite bright yourself learning to read early on. I didn't even know a letter before I started school at the age of 7.

I forgot to mention my awful sense of memory or I don't know if it's memory but I just can't keep things in order when I'm doing something. I need to ask my wife to ring my phone several times per day so I can find it. Sometimes I walk around looking for things that I'm unaware of holding in my hand. Other times I am looking for things like car keys and by the time I find it in some pocket I have already misplaced the credit card in the process. It's so bad I actually wonder if I'm present in life. I also get angry really fast when something is not where it's suppose to be - so those to traits are a bad combination.

Thanks for sharing these small glimpses of how your boy developed. It's a big mental help for me hearing about other families and how their kids developed.

That's a good way to describe it. The "the youtube family, kids unwrapping toys etc" show is a regular here along with "couple of dudes playing Minecraft", and "annoying internet memes/vines on loop", and I can't stand it.



Yeah ... I can relate to that. I have to ask for phone calls to the misplaced phone too.



You're welcome. I know it's hard to see just how much they're going to grow and overcome challenges when they're small and missing some of those major milestones, but a lot of those goals often can still be reached with persistence and time.

Hi Jon, It;s been about a year I think since I've posted. My daughter's started high-school and has been taking most of my time and energy.

I guess life gets in the way.

Ironically I started this sticky thread "Kids w/ Classic Autism, PDD-NOS & Speech Delays" a few years ago to specifically allow parents of children (in this category) to share the progress of their kids

In my absence I was hoping somebody would take over from me but alas I guess everyone's too busy or too unwilling to share their children's experiences

Better kick start this again...

My daughter (affectionally known as cybergirl) turned 13 and is doing ok in terms of her personal goals. She speaks ok and asks questions. She loves music and art and is a beautiful child,

On the downside she has no friends in her mainstream highschool, nobody invites her to birthday parties and parents avoid me at school pickup even though we invited their "little brats" to her birthday party and made a somewhat vain attempt to swap phone numbers. Oh well "cest l vie"....

I think the thread is worth a lot. I read it through during the summer, bit by bit just before falling asleep. I hope you'll be giving us updates even 10 years from now

It's really sad to hear how parents around you behave. Your daughter is already having a tough time with the social part and then these parents go make things even worse. Sickening.

In my class, back in 1987, we had a guy with borderline learning disability. A total unmitigated disaster when it came to tests at school. Couldn't answer really simple questions, somehow got himself through the school system all the way up to age 18. Of course he has suffered a lot because he's aware he's different and has a lower level of mental ability. However, there's no one who dislikes him and he's fun to have around because of his unique personality. This year he became a father of a baby girl. So given the right environment anyone can enjoy life.

LOL! there's plenty to read now...I think this now one of biggest parent threads on WP

I have learned to understand that parents ultimately want the best for their kids (whether NT or disabled) and this is a competitive world so despite the effort I have made in trying to engage with other families they appear to busy (although it hasn't stopped one parent from driving 1hr to my house to borrow my garden tools). Also the children simply can't connect with my daughter and she doesn't really reciprocate much other than playing alongside them.

My wife and I keep her as active as possible, physical activities, overseas holidays, horse riding, rock climbing as well as regular speech therapy (which has been far more helpful to her than ABA, psychology or OT combined), music classes and sport.

She has over the past couple of years developed independence and responsibility, I think it has something to do with developmental changes she is going through.

She's actually great fun to go out on activities but she still has noise sensitivity issues and of course teen dramas over what clothes to wear (we had a big drama yesterday over her wanting to wear tight pants) and sudden change of schedule although she is much better at coping/adapting to these nowadays.

Hi:DMy boy is 5 and is in a normal school GrR.I start noticing he has n speech problem at age 2.I start giving multivitamin,at the time I have little knowledge of Asperger’s,autism,speech and language disorders.I did see n GP and tells me boys stimulate later then girls.So I start doing alot of research learning what to look out for.I learn myself of learning him the best I can.When he was 3 I do 30 Min of sit and learn.It was a struggle at first but with great dicipline it can be done.He was early on walking,potty training and teething.I was the only one that can understand him with the few words and gestures.He is a very happy little boy and loves his sister.When he turn 4 I can see much of a approval.He was talking 3 words sentences.I have little knowledge about diets so i starting giving healthy snacks.So I continue with all sort of things I read to help him and play learning.Yes it do suck your energy.I Will do jumps to help him what is up and down for as long as I could:D I will play teacher and make it fun that he wants to learn more.He do alot of exercises with me.Lol that why he have great moterskills.He can climb well and ride a big bicycle without support.His memory is great!!!Little things you do,make a big difference.He’s first year at school:hi:explain his teacher about his speech problems.She had to fill forms the specialist wanted.She says he can not express himself verbally or enage in a conversation.He easily gets frustrated which results in conflicts with his peers.He is not disruptive,but his attention span is limited.I can see the progress he is making in school\\:D/.I still play teacher everyday he can almost write he’s name.He know’s the shapes,animal voices,body parts and talk alots.But he is still behind.He like to sing.He can sing happy birthday perfect He do chooses poeple he want to interact.But my thoughts on that’s are the poeple that wants to make that effort.Like I said he like to play so everyone that’s in for a play they have his full intention.He is extremely busy at home love love play.He always around his big sister they do get in fights.They do get frustrated with one another .But they can't play without another.He can write well 1 to 10 and draw shapes.I like to test him and read and ask questions.There so much progress in his speech development.:yipee:We still in progress of a diagnosis.I believe every child are uniek.<3

Hi mom2randall

Welcome to our autism message stick in cyberspace

It's always a good sign if your 5 yr old son is making progress in speech, Keep an eye on what interests him and use it as a pretext for stories and conversations.

I know it's not always possible but keeping your son in mainstream school (at least for primary) would be more beneficial than putting him into special ed. This is particularly important if your child is impressionable as he will be looking for role models/peers at this young age.

Mainstream schooling was beneficial for my daughter although we had had an extremely tough time...

Anyway whatever school you decide to send him just make the most of resources such as speech therapy. BTW how do you find schooling in South Africa? how do they cater for special needs?

Hi My kids love their school.The school are great and very discipline.The teacher are good and always open to help you.Lots of extra mural activities and sport.Its a state school and school fees are also affordable.The school always helping the children that don't have lunch.So it's nice that they think of the children who have little.They start from GrR - 7 Afrikaans 1st Language.High schools Gr8 -12.Every ones a years they providing health services.So that's great .The special needs state school think premary works in groups and high school Gr8-10.Private is expensive works in small group 15children a classes but will finish Gr12.I will prefer to keep him as long as possible in the school he is in.I know it's gonna be hard on him.If it not working for him I would rather do home school.Because most of the private special needs school are far and will struggle with their activities.I like to be there when they do sports and stuff.I feel positive about him he really doing good so far and is very proud of him. Yes I will do speech therapy this year did see one 9month ago.He wasn't comfortable and was very nervous.I think he is ready and more relax.He don't like docters and one day on our way to the docter he tells me.Mommy I can speak.He speaks alot but leaves sounds out of words.I do my best to correct him with words he struggle.He like to build stuff out of any materials he can find.He knows how to work with computers and tablets.He like to watch DIY youtude video's I can see alot of approving in he's speech.

Hi Mom2Randall,

I think it's great your son has his sister in school. I think it's also beneficial that your son will be exposed to Afrikaans as well as English, something that isn't studied enough is the benefit of bilingualism to enhance speech in kids on the spectrum.

The fact he is trying to speak at 5 is a really good sign. Stay positive and just spend a lot of time engaging in normal conversation you would have with a 5 yr old. It also helps reinforce what he's learning in speech therapy.

Yep my daughter loves DIY videos, but mostly on cooking and cars

hi cyberdad,

How old is your daughter and how she doing?

Excuse me for just stepping in like this, but I wanted to say welcome to this thread to you Mom2Randall Glad to see more life into the thread.
Your kid seem to be getting on quite well. I'm not an expert on autism but many things you describe about your son is remarkable such as the great motor skills. These kids normally are clumsy as h... Already using the toilet, likes playing with his sister, walked early. Wow, all that is great stuff. And that you found a way to connect by exercising together is nothing but amazing. I will credit you for all of that as I know what kind of job needs to be done to get anywhere.