New, struggling with possible ASD diagnosis for my child

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My son hasn't been officially diagnosed with ASD yet, but we have an evaluation set up in a month to, well, confirm or deny our suspicions. He's 2.5 years old, an only child, and he has severe delays in receptive and expressive language. What little speech he DOES use is some form of echolalia, and not actually original speech. He's also in developmental and occupational therapies, struggles with loud noises or any change in noises, and has been informally diagnosed with sensory processing disorder. We just had his hearing tested, and he passed with flying colors, so that's been ruled out. All 3 of his therapists feel that he will be diagnosed with ASD.

I'm a stay-at-home-mom, and my son's primary caretaker. I love him so much, and I'm putting tons of effort into carrying over the therapies at home and making his life easier, while pushing him to do better. I'm on track with everything we can and should be doing for him, but I guess I just need a place to vent and possibly connect with others who are in a similar position.

I'm struggling with this. I'm ready to have answers, but I never wanted this for him. He's such a wonderful little boy, and I hate watching him struggle, even to tell me that he wants a drink He is so intelligent, but he gets so frustrated because he can't communicate what he wants or needs through words.

It sounds like you have a plan and are on track, That is a good deal of it. I would try not to let the echolalia bother you. I posted about this recently on another thread, but it is a "normal" part of language development for many on the spectrum and it does evolve into regular speech. In the meantime the more you talk to him, the more speech he will have in his database to pull up and use, and it will be in proper context with the correct meaning more often.

Many will try PECS or sign language in the interim to supplement speech and boost communication which is more important than "pure" speech. We never had luck with that ourselves b/c he really never took to PECS and he was (is) terrible with expressive and receptive gestures.

Hang in there.

Welcome!

Don't panic! It's all going to work out.

None of us wanted this either, but it couldn't have been any other way. Once that zygote formed and attached, our fate as autistic was decided.

Please understand that I no longer consider myself broken. It is society's perceptions that "everyone needs to fit in" that is what is broken. I don't intend to be rude or offensive when I say this, but I see this sentiment in the above quoted statement.

If you indeed have an Autist on your hands--and it sounds like you might--you have a wonderfully interesting, beautiful and unique mind under your care. Meltdowns aside ( ), I would look upon it as a blessing.

Good luck in your quest for answers & understanding.

I will love him no matter what. I wouldn't change him for anything, because if I did, it wouldn't be him. I just hate watching him struggle, you know? As a parent, you want life to be easy for your kid, and it won't be easy for him. I don't think he's broken. He amazes me every single day.

We are working on combining verbal words with basic sign language, and that seems to help. He's picking up on it quickly. I have no doubt that he will be able to communicate, but the original speech might just take a little longer.

We went out to dinner tonight, and my son was, as usual, a little overwhelmed by all the sights and noises. He's a shrieker, and makes this earsplitting scream when he's overstimulated. He actually did really well tonight, and only shrieked maybe 3-4 times. This high school girl in a booth nearby kept making loud and rude comments that were obviously meant to be heard by me. I wanted to go tell her off, but by the time I got a chance, she had left already. The experience made me realize that an ASD diagnosis isn't very big in the grand scheme of life, and put things back in perspective. He's my beautiful baby boy, and that'll never change.

Depending on how long the shrieking goes on and what causes it, you might want to scale back some of the more stimulating environments. We had to do this in the extreme and gradually phase in that kind of stimulation. When he was really little, I had to send my husband to the supermarket without us, b/c the smells and the lighting and the crowds was too much. This was well before we even knew what was going on. We just knew these trips were overwhelmingly stressful to him.

He is 8 now, and we can take him shopping, to restaurants, ball games, amusement parks etc. We know what his limits are and work within them, occasionally stretching, sometimes b/c life dictates stretching, and sometimes just to see where we are.

Assuming your son is OK with receptive language it will help to give him plenty of warning about outings and reminders, and to try to stick to implicit promises *If you say you are going to a particular store, try not to add any more on the fly, etc. Even, if he is lacking in that area, it is a good habit to get into. It really helps everyone when our son knows what to expect.

Sweetie, it will all turn out OK. You can also pick and choose therapies - at this stage you don't have to let anyone pressure you into running around to every single possible intervention that's out there. You are not a bad parent if you opt out of some things - you can always add them in later. Even if you do want every single possible intervention, guess what? You'll get a breather every now and then because there's respite care, preschools, therapists who come into your home - loads of stuff you can take advantage of.

My 13 year old daughter was almost like your boy, but less intense on the sensory stuff. I home schooled her entire life up until this Fall. I never put her into any therapy. She wasn't diagnosed until this summer, when we finally *needed* a diagnosis (it was no surprise when we got it, LOL). When she was little, we would go to zoos and aquariums, and I would work on simple concepts. Big elephant, little bird. Big giraffe, little bug. Big alligator, little frog. That motivation - all those cool animals, helped a lot. When she was 5, we moved across country into a climate more conducive to outdoor activity and we lived 4 generations under one roof for a couple of months. Her communication skills expanded hugely in a very short time. She progressed well with communication, but struggled for years with academic subjects. We hit a speed bump recently - 13 is a very hard age for anyone, and we saw it's hitting her very hard indeed. So now she's in public school special ed. Everyone from the evaluation team to the bus drivers have said she's a terrific kid and we've done a great job with her. She's great at art (she goes to a mainline class with another of her classmates and a paraeducator) and has just in the last few months started writing creatively. She has all the earmarks of a good children's book author/illustrator, or possibly a cartoon animator - she doesn't think it's boring to draw the same character over and over and she's exploring perspective, expression, etc. to move the stories along. She's one of the most compassionate people I know, and is quite a blessing to the elderly and to the physically challenged kids in her class. She's held the hands of the dying and plays peek-a-boo with fretting babies at the grocery store.

So take a deep breath, make all those decisions, pursue the options that your heart says is right, and hang in there. Don't borrow trouble, just take this one day at a time. You and your son will have rough times, I'm not denying that, there will be challenges that will break your heart, but if you focus on the good and look for all the golden opportunities that will come your way from time to time, you both will be OK. And don't forget - there are good people here who've got your back!

We're clear at the other end of the ballpark-- my son and I are very mildly affected; I could have avoided a diagnosis all my life and he probably could too. So maybe it's not my place to even try to speak to you. But.

It's going to be OK, Momma. It is not going to be easy, it is not always going to be fun, and people are not always going to be nice (or even decent), but it is going to be OK.

You have a good head on your shoulders, so use it. You will. It will be OK.

He is going to have struggles, and his life will be hard. No one's life is easy-- some are harder than others, but no life is easy. Would you really want it to be?? Really?? What kind of person does an easy life make?? If everyone's life were easy-- or if we strove to make it so that everyone's life was easy-- what kind of a society would we have??

A sick one, I think. A profoundly sick, shrivelled, weak, broken one. One much, much worse than anything that can be said about the life (or behavior) of an autistic child.

I believe that The Powers That Be (God, or whatever pleases you) make "special" children for a reason. You don't have to believe that, but it works for me. I don't fully understand it, but I believe that one of the reasons is to keep our eyes and our hearts open, to keep us from getting full of ourselves and thinking that our way of life is the only life worth living, and to keep us from becoming that weak, withered, easy society.

I'm sorry. You don't need me to get philosophical. You probably need some other kind of empathy. Like a hug. Have several.

Yeah we've scaled back the stimulating environments a lot, and when we do go out, we tell him where we're going and we try to make trips in public, like to big stores and stuff, as short as possible. We do take him out of the house still, but we try to make it as easy on him as possible, using flash cards, our phones, his noise-cancelling headphones, sitting him facing toward a corner or as far away as possible from noise in restaurants.

The problem is, his receptive language is far behind, so we're not sure how much he's understanding when we tell him things. We've started using a picture schedule, and that seems to help a little.

I will tell you, the most difficult times we had that did not involve environments was when the communication was not there. So, things will look up when you get past some of those hurdles. Our worst shrieking/meltdowns etc was when he was under 2 and his receptive language was not there. It got gradually better from there. At 2.5 it still was not so hot. I think even with turning yourself blue in the face trying to help, some of it is just when the light bulb comes on. So hang in there.

Even if it is not seeming like there is immediate progress, he may be storing this stuff in his brain until it clicks and then you will see much faster progress. That was how it was for us. It was like a gradual improvement while it was starting to click, and then "boom" an explosion of progress. In the meantime what helped us the most was getting him to understand that we were trying to understand him. Even just that understanding helped b/c e knew we were on his side and he could trust us. Trust goes a long way. So even if he seems frustrated that you can't read his mind and that what you are saying makes no sense, just the fact that he can see you try will help set him up for future successes.

It gets better.