Life ahead for an ASD boy

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Hello,

I thought many timees before typing this and not sure if this is answerable. But still decided to post this as thoughts about my sons future is killing me every single minute.

My son is 2 years 8 months. He was diagnosed as having ASD 4 months back. He now has little functional speech to express his needs (manding for food, toys, activities both in and out of sight) in single words. He identifies and names hundreds of nouns and even verbs. He understands simple commands and has comprehension of many verbs. I communicate to him in one or two words or simple sentences. He seems to understand quickly and do not need much repetition to learn a new word/song or imitate an activity. He still doesnt call me mummy, but he knows I am 'mummy' and he knows his papa/grand dad/grand mom etc. He still do not communicate for any other reason than food/play/sleep/nappy change, but will wish and acknowledge people by eye contact and words (Hello, Good Morning, Good Night, Bye-Bye) etc. He has good functional play bit very less or no pretend play. He loves puzzles, books, shape sorters, cars and stacking toys. He has less repetitive behaviour except he flaps his hands when very excited (rarely), jumps up and down couple or times and makes an 'eeee' sound when he is happy and spins (very rarely). He likes to look at fan often and when he is anxious he immediately looks at fan. He also looks through with one eye made smaller at TV/leaves moving in wind. Few behaviour issues have started lately like he wants to wear many layers of clothes. He has little or nor interaction with peers. He wants to run away when outside and loves his swing. He has huge separation anxiety and will not stay away from me.

4 months he back he had no functional speech, a few things he used to identify the names. He used to bit more social before he regressed at 18 months (play hide and seek, used to seek attention and was friendly and pleasant with everyone). We do not have any provision for any therapies where we live (even there are not trained therapist). I left my job and stays with him full time. I try to learn by watcing videos in youtube and reading books and work with him. He pays attention when I try to teach him. In strucrured learning and play he does well. Still struggling to have longer interactions during unstructured play. He keeps moving from one thing to other and do not appreciate my interference much. I am not a very creative person and feels like I need a lot more ideas to get my sons attention on this. I have not tried to stop any of his sensory quirks. He has come a long way in last 4 months, but still a lot different from a typical toddler and has emotional maturity of may be an 18 month old.

This is a brief (very long?) overview of whats happening with my son. Do you think my son will be able to adjust and learn in a normal school setting and will have a happy, independent life in future? I am always worried about him day and night and often go hopeless. Please share your thoughts.

Regards
sresree

It is very hard to make any predictions because you don't know how much your individual child will develop. There are development spurts and times when they plateau, but you cannot predict the magnitudes.

There are also other variables not under your control such as how much scaffolding /assistance/accommodations your school district will supply and how much pushing you need to do to get it.

So, there unfortunately is no way to answer your question. You can just do the best you can, and try not to worry.

The fact that he's making progress so quickly bodes well for him, I believe. Many autistic kids that young hardly make progress at all unless severely prodded by things like Applied Behavioral Analysis (ABA). The fact that he is responding to you at all, absent any therapy, also bodes will for his future functioning, I believe.

He's probably going to be a somewhat quirky child who might be teased. Prepare yourself for that. He might have trouble with social interactions and making friends. Be there for him. Don't judge him because he's "socially inept."

And as I think about it, THE VERY FACT THAT HE HAS FUNCTIONAL SPEECH AT ALL is conducive to a positive outcome.

When I was 2 years, 8 months, I didn't speak at all; in fact, I didn't speak until 2 1/2 years later! I am a married man who has had employment for 36 years straight, drives, and a college graduate.

He sounds fine to me.
ASD is more of a characteristic than a disorder. I resent the change in 2012 from Asperger's Syndrome to Autistic Spectrum Disorder. I think the title alone is causing you unnecessary stress. To me, it is as offensive as saying African Americans have Black Disorder or something like that.

The boy will be different than most but he will be able to function just fine in the world. He will posses strengths that most people can not match, as well as a few adaptable trouble areas.

Tony Attwood has also named Einstein as a likely case of mild autism so, keep your head up.

Hi sresree, this is my first post so please forgive the way this will probably look.

My son was diagnosed PDD_NOS when he was about 2and 1/2 yrs old. He's now 13. I can totally relate to how you must be feeling. I cried when his developmental pediatrician gave me the diagnosis. Please trust me, it will get better.

The school district where we lived had a community school for what I will call developmentally challenged kids. We had to wait till he was 3 to enroll him. From what you've said about your son sounds very familiar (from personal experience). One thing I started doing was keeping a daily journal; and to keep this as short as possible, as time went on I could see the progress for myself. Which was encouraging and made me feel empowered to know I was doing something that was helping him. Every day when I picked him up I always made a point to talk to his teachers and aides on what happened. I also asked for activities I could duplicate at home that reinforced what they did with him at school. I had to prioritize my daily activities, his always came first.

Sorry, a little background; my son didn't have but 2 or 3 words, never interacted with his same age cousins always staying on the perimeter just watching them, terrified at the noise from the vacuum, hair dryer, lawn mower, etc. I could go on but won't. He made it through 2 years, 4hrs/day, 3 to 5 days/week. Then started kindergarten with 1/2 days to start. Special ed class with a SLP and an OT and I learned every thing I could from them to practice with him at home. By first grade they introduced him to a mainstream classroom setting for 1 hour a day with an aide on hand in case of meltdowns. Oh, forgot to mention I was fortunate to have my son's dr. write out what needed to be included in his IEP because I would've been clueless without her help.

Sorry this is so long but I mean well. I guess I just want to let you know it will get better. Cry if you need to and write things down. This too will pass. My son's going into 8th grade soon, had great grades and a couple "friends" from his school who he plays online game with though he doesn't seem to have any desire to see outside of school. He seems to be very happy so that makes me feel good; of course now I wonder how high school will be and beyond. Just remember, he is capable, it just takes more effort and time and some planning. I hope this helps a little bit (I think this even helped me feel better) and don't give up.

Please don't do this. Talk to him as you would any other child. Just because he doesn't speak much doesn't mean he doesn't understand much. My son could only say two words (ma and da) when he turned two, but I knew he understood many more because he could follow simple directions like "get the ball", etc. By the time he was four he was hyperlexic and talked like a professor. At 11, he is now a great reader and a terrible speller. He talks a lot (too much, really) but he says a lot of random, non-sequiter things.
My point is, kids with autism often have an uneven intellect. They can be a strange mix of brilliant and behind their peers, all at the same time. They also are prone to falling behind developmentally and then suddenly leaping ahead almost overnight. So never assume that your son is not learning, or that he needs things "dumbed down" for him. If you assume he's a genius it probably won't hurt him if you're wrong, but assuming he's the opposite probably will.

A big factor is his intellectual functioning.
Is your son intellectually disabled?
If not, he will be able to learn most things as well as any other kid.

There's no way she can know this yet. He's a two year old baby! Most reputable doctors won't say if a child like this has intellectual impairments because its so likely to be wrong. They use the term developmentally delayed, which he is. But that doesn't mean that he won't catch up. A lot of autistic kids are like this.

Your son isn't going to be just fine. He's going to be GREAT! There is so much gloom and doom out there about raising us kids with disabilities. Don't take it on. People who tell you otherwise are just out to steal your happiness.

From what I can tell, it sounds like he's making a lot of progress. That's because he has the love and attention from an adult who is trying to balance honoring his special needs with teaching him the things he needs to learn to be in the world. Keep that up! His calming himself by watching a fan is classic. If he learns to calm himself, he will be more available for learning. The kicker for you as his parent is to figure out how much he really needs before insisting that he pay attention to you again.

You can't know how far he's going to go. You just can't. The truth is that no children come with a guarantee - with or without a disability label. We don't know that they'll be happy and that they will make good decisions in life. We don't know that they will ever launch into adult independence. Parenting is a huge leap of faith.

I was so unhappy as a child. I didn't have your son's difficulty learning to speak. But at age 9, I was in special education services and everyone had given up on my ever achieving academically. One of my most vivid memories is of my mother crying that I was never going to collage. ... I have a graduate degree, BTW. My mother denies that ever happened, but it did. Autistics learn and develop at different rates. Its perfectly normal for us.

You might want to start considering that going to a "normal" school might not be the best way for him to learn. A lot of us don't thrive in regular schools. You can't know yet. But just keep that in mind. If your goal is for him to be happy in life, forcing him into things that aren't right for him is going to take him further from that goal, not toward it.

Your post says that you are from Reading. Is that Reading PA in the US or Reading in England? Both of these places have early intervention services for kids with autism.

I know its hard to cut through red tape, but you have to get yourself to do what needs to be done to get him these services for the upcoming school year. It could make a big difference in how he succeeds throughout school. (Unless you intend to continue homeschooling him. That's a whole different topic.)

Its simply not true that you are miles away from services in either of these places. I don't know how to access things in England. But in the US, baring any other more obvious method, I would gather him up and swing by the local elementary school. Ask the secretary who to talk to about early childhood special education. The "special" is important, as you are not asking about regular pre-school. They will have a program. They are required by law, and they are required to provide safe transportation, too. My old school, when I was a teacher, had a school bus with a bunch of baby car-seats in it. (I have a thing against phones. But calling would work, too.) Some places provide home interventions for kids under the age of three. In PA, these services should theoretically be available since birth, so he's not too young.

http://www.education.pa.gov/Early%20Lea ... aspx#tab-1

Thank you all for the kind replies. This gives me hope and energy to go forward. Replies from somanyspoons, kraftiekortie who themselves are on spectrum is most reassuring and gives me immense hope. This is the best thing about this forum. Thanks a lot for your encouraging words and suggestions and tips.

I understand he has strengths, but he also has challenges. It is not easy to understand him, but my attempts to help him is surely working which gives me hope. I have no idea about his intellectual ability right now and not sure if there is any way to find that out at this age. This forum and you guys are surely a great motivation to stay focussed.

AngelicTouch, YippySkippy thanks a lot for sharing your experience. Wishing your kids all the very best in life.

somanyspoons, thanks a lot for the detailed reply on early intervention. But unfortunately things are not that great here in England and we are stuck in waiting lists .We are from Reading, England and my son is on the waiting list for ASD assessment. Current waiting time is around 18 months . Meanwhile the council is offering a few hours of speech therapy. We are on the wiating list for that too !. I am trying to find all the ways I can help him.

Thanks again and all take care !

There are some clues to intellectual ability at a young age.
If your son plays in a fairly complex way (doesn't have to be social play) and explores his environment and appears to learn things himself and figure things out himself, then he is not likely to be intellectually disabled.
At the other extreme, there are children who do the same simple activity very repetitively for many hours a day while not engaging in any complex play and not appearing to figure things out themselves, and in this case, intellectual disability is more of a possibility, but not guaranteed, as some children may catch up later and show more intelligence later.
So I would observe his play and learning at his current age.

His play is not typical. He is interested in shape sorters, puzzles and stacking toys. During the first few days after he gets the toy, he will play with it in a proper way. After that he will start carrying around parts like 2 shapes or puzzle pieces or blocks or picture cards. He will simply look at it from different angles and spent time simply roaming around with it. Then if he has to play with it properly, I have to ask him to do so and sit with him. He will do it without help, but I have to make him to play with it in a proper way. Likewise with cars, he watches the wheels while playing with cars. He will push cars on floor, steps, on rails but many cars all in a line . He likes to transport some of his favorite things on cars. He transports rings, bottle lids, small bottles in his cars/trucks , if I show him transporting few figures (people figures), he will do it for sometime, but will again go back to his favorite things . He also loves books. He makes me read the same book many times. He fills in words as I read the book. Every night he makes me read 3-4 story books. I doubt how much he understands though.

He has good observation of material world and knows function of things and what belongs to whom. Mostly he figures out himself or sometimes if I have to show him, he gets it quickly. He find it funny if we change the function and gets upset if the object is used by another person than the one to whom it belongs. Last day I was combing hair and I put my hair band on my wrist. He came into the room and started laughing. I didnt understand why he is laughing. He went to another room and brought me a bangle and made me wear it. I put the hair band back on my hair then he again started laughing and took out my bangle and placed it on my hair ... It was very funny for him.

He also imitates actions. He likes to pull out the weighing machine and look at his weight, he even shouts his weight, he just reads out a number that he sees on the dial . He saw me doing it once and started imitating. He also imitates taking his favorite medicine. He has an empty plastic bottle. He shakes it, puts a spoon and stir it well and takes a few drops of medicine, the exact same way I do . If I ask him for some, he starts laughing and shakes his head No...

He is quite active, but spends considerable time roaming around and looking at his favorite pair of things (for the day). I am not sure if he has complex play, but his observation and know how of material world is not bad.

I used to be a special educator. For a brief time, I worked in the early childhood education program. This kid you are describing is going to be fine! I do hear some evidence that he is on the spectrum. And I still think immediate evaluation is important. But he has all the hallmarks of a kid who will figure things out in life. He's still two! He's doing a lot for a two year old.

Repetitive play is totally normal in a two year old. Its totally normal for him to want the same books, and to have his favorite toys that he plays with over, and over, and over again. That's how two year olds learn about the world - through repetition. "Complex" play isn't really seen until later.

I think your son is intellectually fine, based on this description.
No sign of intellectual disability here.
He seems able to learn as well as most children when it comes to material world.
Socially, he would require more explicit teaching if he has deficits in social areas.