Having problems coping

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Any advice? I knew when my son was 7 months old that something wasn't right. I took him to the pediatrician and nine months later I got the official diagnosis. Even so, I was shocked and had him evaluated by an additional 2 specialists and everyone said the same. Fast forward 8 months, he has shown improvement but 'it's not enough'. It has been suggested that his twin, who is accelerated be sent ahead to pre-k so they can socialize with other kids. As for my ASD son, they suggested he might do better in the under 2 room (baby room). I am pretty devastated and unmotivated at this point. No matter how hard I try and what little he does improve it doesn't seem to make a difference to the clinicians. He will always be autistic, always be impaired, always struggle. So why bother? Just let him go into his own world. It certainly is easier and costs less money than trying to 'treat it.' I think I should be saving that money as it appears he will never be able to take care of himself. I wonder what will happen to him after I am gone. What steps have other parents taken?

Your mentioning an under 2 room makes me think the kids are in private school/day care. Public school may be a better option for your ASD kid, depending on what they have available in your district. If he is under 3 he would be eligible for your county's zero to three program, with various services. Older than that it would be the district's SPED pre-K or regular pre-k, depending.

I don't know what "it is never enough" means because I do not know specifically what your child's aptitude/weakness profile looks like or what (arbitrary) goals the clinicians have made for him. What can he not do, that they are so terribly distressed that his progress is not fast enough?

Kids with ASD have their own developmental time table. There is no time table of theirs that he should be rushing him towards. There are certain things that can be obstacles like toilet training etc. that may limit how the school wants to educate him--but these are things that can be worked around.

Edited to note I just realized your son is 2, so the under 2 room is not that big an issue because he is barely two anyway.. If you are upset because one child is developmentally ahead and ready for regular pre-k then you would have that issue of uneven development regardless of ASD or not. Twins are individuals regardless of neurology. I do not have twins but I understand why you would want to keep them together, but sometimes that is just not what is best.

Edited again to add a disclaimer: Where I live, the public schools (which we were utilizing at that point) would not red-shirt until after kinder. At that point I did not ask for red shirting because at that point there would have been self-esteem ramifications and certainly academic ones, that there would have not been earlier on.

So, I probably sounded harsh up above, because I don't think of red-shirting as a bad thing, and would have opted for it myself before kinder. Then I thought about it and realized with twins, it is probably the same stigma because they know and everyone else knows they are the same age.

I guess the best way to look at it is you are accelerating the first one vs keeping the other one behind and just vocalize it that way as well.

If the school/daycare thinks it's better to keep him in the under 2 room for a little bit that may be beneficial if that means he will get more one on one attention. Don't let them keep him in there indefinitely though. He needs to be challenged and engaged. He's autistic so he's on his own timeline but lots of members on this board are autistic. His diagnosis is not a death sentence, it merely gives you and others who interact with him insight into his likely strengths and weaknesses.

Hi and thanks for responding.

Yes they will not turn two until August 5, and gestationally until September 2. Which I mention because September 1 is the cut off so had they been full term they would not start until next year and they would be the oldest kids in their class. Starting them this fall means they will be the youngest kids in their class. They are currently kept at home. Putting them in school was at the suggestion of the autism center for socialization purposes. It takes my asd kid time to warm up before he will play with other kids and even then its parallel play. He prefers to be alone. His brother is pretty outgoing and will join right in. I am planning on putting them in separate classes as my asd kid doesn't particularly care to be around his brother (although the other brother cries until he pukes when they are separated). The rooms will be adjoined by a door in case one of them freaks out.

I have already been in touch with the public school system. They have a immersion program that hopefully will take both boys when they turn 3.

You know, I not sure *I* know what my kids aptitude/weakness profile is and I am not aware of any goals set by the autism center. I got a dx, a pamphlet on estate planning for special needs, and scripts for OT, ST, and ABA and was told to follow up in 6 months which was this past week.

Originally at 7 months I noticed loss of babbling and eye contact. I went to the pediatrician and she was able to elicit eye contact but referred to the local early intervention program. To be fair, you could then elicit interaction with him by being very bright and engaging. They came out, diagnosed speech delay and started therapy. Two months later (age 9 months) he was back on point, making eye contact and babbling appropriately. They then stopped ST and instituted 'play therapy' basically someone came out and played games with him every other week. Honestly all was fine until the holidays last year when I noticed he was not speaking at all and little eye contact. This time I pushed and ended up getting formal evaluations done. Here are the deficiencies noted at the first evaluation:

Lack of social reciprocity, no give and take, no imitation, no joint attention. Although he will smile at me when he smiled at the clinician she said it was not a social smile. He doesn't point- he does have a defined reach for a preferred object but I was told that 'doesn't count'. He would not look if you point to something and said LOOK. He still doesn't do that. He is now performing some imitation, reciprocity, etc. He will rarely bring an object to you for help. He has never brought one to me just to show me. At the check up it was noted that there were some 'beautiful moments' of joint attention between the two of us but that 'it was not enough.' I guess I should have asked how many hours a day he should be interacting with me?? Poor eye contact although the therapists who were treating him at the time disputed this. It was not noted to be an issue at the last visit.

In terms of repetitive and restrictive behaviors- although he pushed the fire truck back and forth he did look at the wheels and pressed the button for the truck to light up. He did like cause and effect toys especially ones that made noise or lite up. He would do this for 2-3 minutes then move on to another toy. He did hand flap when excited for 2-3 seconds. Oddly this disappeared 2-3 weeks after the dx. He does tip toe walk when excited. He also likes to carry an object in his hand, he doesn't care what it is and won't protest if you take it away from him as long as you replace it with something. At the most recent appointment they did state there were no repetitive and restrictive behaviors observed.

He does not have any food issues, or conduct issues or sleep issues. They tell me repeatedly how lucky I am and that it probably won't stay that way.

We have been working on speech and honestly the most helpful thing so far has been tubes. He had those on the 21st and said 4 words this week (not sure if he knows that when he says ball he means ball but I'll take it). However, accompanying this new language is the return of some serious handflapping and backarching when he finally gets his word out.

All kids have their own development time table. My son is HAPPY. Doesn't that count for anything? It just irritates me that when I go to these appointments it's a list of all the negatives (or mostly negatives). Even the positives turn into negatives. For example, your son is good at problem solving, which is good since he's autistic.. It will help him cope. Or he currently doesn't have tantrums and is easily soothed when upset. Tantrums are usually caused by inability to communicate so you really need to focus on getting him to speak.

Am I the only one that wants to tell everyone to eff off that my kid is cool AND happy?!

I don't know if I am upset at the uneven development or the suggestion that my kids need to be in separate grades (keep in mind that the ASD brother would be a year behind if I chose to put him in the baby room). I think the uneven development is to be expected. Heck they are fraternal twins so basically they are brothers that happen to be born at the same time. I don't necessarily want them to be in the same room, but yeah I do want them in the same grade level.

And the other thing I am worried about is bullies. My kid is so sweet. He just let's his brother take his toys, he may cry a little but will walk off and self entertain. I think his brother makes him anxious that is why he doesn't like to be around him.

Last edited by byathread on 15 Jul 2017, 9:00 pm, edited 1 time in total.

Thanks. I needed to hear this. Because they make it sound like a death sentence. The daycare I am pretty sure I am going to use doesn't think he needs to be in a baby room. They have two classes for the two year olds. There are 14 kids total with 2 teachers and a para-pro that floats between the rooms. I don't think the other school wanted him honestly.

You didn't sound harsh at all. Honestly, I was going to make a game time decision when they were 5 about whether to hold them back because had they been born on their due date they the would not have been 5 by the start of the school year anyway (albeit one day short). I have had so many people tell me the benefits of red shirting boys. I would hate to have them in different grades even tho they are the same age. It's not fair to either of them. I hope in the next three years things will shake out for the best. I suppose what is frustrating is that the one twin is showing signs of giftedness and my other son is doing his own thing. I know not to compare and that he may very well be gifted as well.

Why would having them in different grades bother you so much?

I worry that one would get made fun of or suffer self esteem issues. And then there is the practical implications for them being at different schools between elementary and middle school and then middle school and high school.

I'm so sorry to hear things are so tough for you. I didn't have twins but mine were 15 months apart and Oh my gosh, it was tough. They do consume every ounce of energy. My oldest has HFA and wasn't like other kids. I didn't realise until he was about 9 months and my Mum sat me down and said "You know how he sits for hours and hours in front of the pantry organizing all the boxes, jar and tin? Well that's not normal."
It took me years to find the answer to why he was different because he has physical things too and the physical was all most people saw. An OT once recognised what was wrong and sent us to a psychologist who was completely useless. She did six sessions with him and just focused on his physical things. I took him to a child psychiatrist when he was 2 who decided the problem was my Husband and I were not expressing our grief at not having a 'normal' child and needed grief counselling. That was a load of shite. He had almost died when he was being born. We were just thankful he was alive. We didn't feel we had anything to grieve for.
Anyway, eventually we worked out he was autistic and had him assessed and he has HFA (not Aspergers) and that's who he is and that's OK with us.
When he was small and undiagnosed, he had so many sensory issues and because we didn't know why, and couldn't get help with them, I started to work on them myself. For example, he couldn't handle finger painting in daycare so I got some water based paint and had a hand shower installed in the shower and we started by painting the walls and when it got too much for him, he could wash it off quickly. From there I encouraged him to start painting me. When it got too much, he had control of the water and could wash it off. Eventually I got him to put a bit of paint on himself. It started with just one spot and he had to wash it off straight away. Gradually he built up to being able to have it on his arms, then legs, then body. It was slow but we got there and one day he was able to finger paint.
Everything I did when he was small was done without knowledge of why he had these issues, I just used first principles to tackle them. I do not believe therapists would have done better. I didn't see only negatives. I saw my son and I saw how special he was and everything I did, I did with the love only a Mother has.
You have that love. You can be the most important therapist. You just need to trust yourself.
Just because Dr's and therapists have a qualification doesn't mean they know anything about your son. You are the expert at that. Have faith.
Go with your gut feeling. If you feel something isn't right or going to work for him, don't be bullied into it. Yes it can be scary standing up to people who are certain they know everything and you know nothing, but it's worth it. Do it your way.
And a last bit advice, try not to let this rob you of these special years. They really do grow up so quick. Try to enjoy it. As Robert Brault said, "Enjoy the little things in life for one day you will look back and realise they were the big things." Looking back, not realising this was my biggest mistake.
My son is all grown up now. He won a full scholarship to a University overseas. He is studying law in a foreign language and showing the world that he is different but not less. He is awesome! I like to think growing up with parents who believed in him helped.
Take care and be kind to yourself

Last edited by bunnyb on 15 Jul 2017, 11:32 pm, edited 1 time in total.

OK, so it will be less convenient...but if they weren't actually twins, but siblings who'd been born just a year apart, you'd still have to deal with separate schools at times.

Keep in mind that they're far more likely to be compared to one another if they're in the same grade! On the other hand, and because they're not identical, fewer people would question different grade placements, if that's the way it pans out.

Unfortunately, when it comes to children who differ from whatever's considered "average" in pretty much any way, they're all more likely to be teased or ostracized at least now and then no matter what you do, so focus less on the judgments of others and more on placing each boy in whichever grade/class/school best serves his needs as a whole. A important phrase to know is "least restrictive environment," one that you and his teachers will discuss down the road. Regardless of school placement, though, one of the most crucial ways to nurture genuine self-esteem is to help a child accept and celebrate their similarities, differences, strengths, and challenges, right out of the starting gate. Treat your boys as the individuals they are, and as the amazing little people you know them to be.

During the pre-diagnostic and diagnostic stage, they do give off a vibe of "not good enough" because they are comparing your child to NT kid norms and milestones. This will be replicated to a degree at IEP meetings later on when goals are set, but at that point the goals set for him will compare him to himself more so than NT kids. You'll still have to deal with NT comparisons in order to access services, if they are needed because that is what determines eligibility.

You are not wrong to worry about certain things like bullies and other issues, but once you accept the diagnosis in the truest sense, you start to view things a little differently. You accept that your child's path is going to be different and it doesn't mean your kid, in the end won't be independent and happy. You won't know--and you will still worry, but you won't worry as much about the data points between A and B as much.

I would not write your son off so fast. People on the spectrum develop at different rates than others, and often at different rates from each other. Some people may remain on the lower end of the spectrum forever, and some may become independent, functioning adults. My cousin, who has HFA, was nonverbal until she was four and my great grandmother took some effort to get her to start speaking. I know of individuals who were non-verbal until they were 8 or 9 and now hold college degrees and live on their own. Even if a person does remain on the lower end of the spectrum, intervention is always better than not, and often serves to enrich the person's life. I am willing to bet a fair number of children who were written off and institutionalized in the mid 20th century would not have been the vegetables they became had they actually received interventions. Even normal children placed in those institutions at a young age often developed significant developmental delays.

Your son is different but it's not the end of the world. He has the capacity to enjoy life just as much as anyone else and I think that's what is important.

Being autistic is who we are. My daughter was non-verbal, non-social, had no eye-contacts. Today, she is 9 years old, has so many friends (some are close friends), very verbal, happy, smart, and cute. Nobody can tell she is autistic. But she is, and will be for the rest of her life. Just like myself. Just like my son. My son in addition is hyperactive (and was super-hyperactive when he was younger.) I don't think being autistic means being impaired or struggling. I am not impaired nor do I struggle raising my children... my children are not impaired nor do they struggle. Life has always been easy and fun for our family.

Perhaps it's hard for you to believe it, but when I hear someone has a child on the spectrum, I say: "congratulations." I celebrate autism, as if that's the best thing in the world. You may think I am joking, but I am not. I am totally serious. You can ask my wife, she is neurotypical. She always says, if she had the choice, she would choose to raise autistic children. Life is just so much more fun. My children are at the age (9 and 7) when we can start to let them do their own things, with minimal supervision. They are both darlings to their teachers in school. Life can't be easier nowadays for us.


My son used to hold a spoon wherever he went. He even held a spoon to go to sleep.


Nope, you are not the only one. Being happy is the most important thing. If your son continues to be happy everyday, that means you are doing things right. The day when he stops being happy, then you'll have to revisit your strategy.


This is a red flag. Please double check and make sure they (and you) have performed adequate observations. Repetitive behaviors is one of the most important signatures for autism. If your son does not exhibit repetitive behaviors (stims), I'd get extremely worried. If it is autism, then life is all good. If it is something else, I'd be more worried.

A few things to start with, if your son indeed is autistic:

(a) Draw pictures for your son. Instead of just talking to him, draw pictures for him. You'll need a magnetic drawing board. Search for TOMY Megasketcher. Trust me, we went through 4 magnetic drawing boards. My kids know which one is the best. (If you are in the US, the shipping from UK takes 3~4 weeks, but it's worth the wait.) Talk to him through pictures every night, at bedtime. Wherever we went when our children were younger, we always carried a magnetic drawing board. It was the way how I "talked" to them. That was our main communication device. To me, a message not drawn, is a message not communicated. For more permanent things (like daily tasks, or things that he may need), use 4x6 blank index cards and mini photo album.

(b) Teach him to read early on. Always include words in your drawings as well. Trust me, kids don't need to talk. But they do need to learn to read, early on. In my opinion, they should start with letters and phonics by 9 months old. By 18 months old they should already be reading simple books. If you think I am kidding, think again. I am really serious about all this.

(c) Take him to elevator rides. Let him watch DieselDucy elevator videos on YouTube.

(d) Building block toys are great, too. (E.g. Mega Bloks, and so many others.)

(e) Learn to use image editors and simple animation software. This is for you to learn. I "talked" to my son through animation video clips as well. Check out at least the "Explain Everything" app. When you are more advanced, you may want to learn "Pinnacle Studio Ultimate" as well. Learn to use GIMP (image editor) and Audacity (sound editor) as well. Also, learn to use all the features and connectors of your big screen TV. It's frustrating for me to see parents with powerful big screen TVs but that are unaware of how to use it to play video clips. There are many ways of playing video clips on big screen TVs, but if your TV has USB slot, a flash memory thumb drive might be the easiest way. Otherwise, you can purchase a media player from Amazon and hook it up to an HDMI slot.

It's not a matter of buying audio-visual multimedia products out there. Nope, those things don't work well. You yourself need to draw pictures in front of your son's eyes. You yourself need to make the animation video clips. Your elbow motion conveys information to your son. You cannot delegate your parenting to outsider products. Only your proximity and intimate information about your son's life can teach him to develop a positive feeling towards drawing. By the time he starts to draw pictures himself, your job is done and you'll be worry-free for the rest of your life.

As for eye contact, potty training, verbal, social or behavioral issues... ergh... don't pay any attention to any of that. I am totally unorthodox, but guess what? I am the happiest parent in this forum with the happiest kids. I can't even pretend to squeeze out one single teardrop for my children being autistic. I have tried. It did not work. I really scratch my head at why people make their own lives miserable.

(A few weeks ago my daughter asked us, out of the blue: "Are we the happiest family in the world?" I looked at her and at my wife, and said: "Ugh, probably not, but we surely count at the top." Persistent as my daughter sometimes could be, she then asked: "Are we the second happiest family in the world?" I laughed, and said: "Probably not." My daughter followed: "How many families are ahead of us?" At that moment I told her: "I am not sure. But if you changed the question to: 'Are we the happiest autistic family in the world?', then the answer would be most definitely 'Yes'. That much I am sure." Then she was happy with my answer and stopped asking.)

There is a different way of raising autistic children. You can either choose to be intimidated by the "experts" around you, bombarding you with eye contact, verbal, social, behavioral and sensory issues. Or you can choose to be happy, like me.

The warning to you is, as the forum's name says: it's "Wrong Planet." Autistic people are like human beings from a different planet. The example I most like to quote is:

1+2+3+4+... = -1/12

That is, the sum of all positive integer numbers is negative one twelfth. You think I am joking, right? I am not. All the most famous mathematicians will tell you this result is correct. You can google for "1+2+3+4+..." and you will find out about it, too. If you are willing to open your mind and accept that autistic people are indeed from another world, you can learn a lot from them, and acquire a totally different perspective on life, and be a lot happier.

With that caveat said, feel free to track all my past postings. In particular, follow this recent thread on my views on social skills.

http://wrongplanet.net/forums/viewtopic.php?t=351008

My point is, if you start down the path of focusing on the social skills of your son, chances are that 20 years later you'll still be doing the same thing. On the other hand, if you focus on your son's intellectual and visual-manual skills, then his verbal, social and behavioral skills all will come, for free. Sure, hard to believe, right? Just like when you tell people that 1+2+3+4+... = -1/12, nobody will believe you, either. Yet that's the way the autistic brain works. It's your choice. Parents make decisions. Parents live with the consequences of their decisions.

Even if you put one in the under 2 class and the other in the 3 yo class, that's not set in stone for their whole educational career. You can switch classes mid-year if there is a spurt of development. You can move them both up to the 4 yo class next year. You can synchronize them in kindergarten (either starting when they're eligible or redshirting both for a year.)

There is so much growth that happens after age 2. It is far too early to be predicting the course your child will follow.

There is a lot in this thread and I am going to respond quickly to a few things that jumped out at me:

"He is HAPPY." Excellent. That IS worth a LOT, and you can continue to use his happiness as guide for how to progress going forward.

"Why bother?" Because (a) as he matures he may become more aware, his issues will intensify, and he is likely to become less happy; (b) evidence shows early intervention can make a huge difference; and (c) he, like all children, deserves to find his potential. Even if he will never live fully independently he can give meaningful contributions to our world, and he should be allowed to find that sense of purpose. As long as the efforts to help him aren't taking away from his overall happiness, they are a good thing. You have no idea at this point what will or won't happen; sometimes ASD individuals live in shells for decades and then suddenly break out. You just don't know, and the prognosis has never looked better. I know it is difficult for everyone in your family, but there will be joy in this process, too. Keep using your son's overall happiness as your guide for what are reasonable levels of intervention.

"Enjoy these years." I am so glad someone said this. I feel the same way. The toddler and preschool years are so short. This is the time that you and your children should be enjoying each other as you are. Everything will become more intense and critical as your ASD child gets older, but right now ... you CAN enjoy him just as he is. Get to know who he is as he is, and enjoy it. Yes, intervention can be critical, but I would not allow it to take over. Let him be happy, and enjoy him as he is.

I am going to second (third?) this because really the amount of unnecessary stress that people put on you when the child is this age is astounding. I had a nurse at my son's first pediatric office on my tush to constantly try to make him do pretend play. Was this going to make him any less autistic? Nope. My son looked at me like I was a nutjob. He would occasionally imitate me, to humor me, but the exercise was fruitless because first-off the NT milestone goal is spontaneous creative play. My son humoring his mother made crazy by an idiot, was not going to help him want to do that. Secondly, if we checked off that box, what would it mean?

I gave it a shot occasionally, just to check readiness, but I decided not to drive him crazy with this nonsense, when he was learning so much more doing other things he wanted to do, like stacking blocks, reading, writing letters and other kinds of floor play.

And you know what, he did it on his own eventually, and then kept doing it. On his time table. The best thing we did was focus on what he was motivated to do, and where we had windows of opportunity, and what was fun.

Anyway, the point is, is that you are going to get a ton of unhelpful advice mixed in with things that end up working, and your job is going to be sorting it out, relative to what you think makes sense for your child. People are going to make you think that if you don't do every possible intervention (including ones with no evidence behind them) that you are not doing enough. If you are not panicked enough to other people's liking, they are going to judge you. But the honest truth is worrying doesn't help anything. Might as well have fun like parents of NT kids get to do, too.