Diagnosed 2 days ago

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My son is 19 months old and I have suspected that he had autism since he was 1. At some point he stopped reacting at people. He babbles but doesn't respond to his name. He flaps his arms and walks in circles. Mainly he attaches himself to objects more than people. I consider myself a tough person who is always there for my family but I am having a hard time coping with it. What should I expect, what are his odds for responding to Aba, and what happens to people as they retire and their kids still need their support?

It's really hard to predict a child's future at such a young age. There are kids with only slight differences as toddlers and preschoolers who struggle their whole lives and are never able to work. There are also kids with huge delays who grow by leaps and bounds.

I believe the most important thing is to be with your child and follow your instincts for the child you know. It's been 2 days, I wish there were an easy answer. But there isn't.

You will find a wealth of experience, warmth and compassion here. And I think this will get better.

Do you have family or friends who understand?

Thank you for the welcome, I appreciate it. Its difficult to know that the only answer is uncertainty. My wife and I have several siblings, and both sets of grandparents are helpful. No in our family had anything like this. My wife is young @27 and I am 32. I feel that she is coping better than me. I am not an emotional person, but this has taken over any other thought in my head. In my mind my only child is not able to face the world and I feel severely depressed about it. I am not used to not being able to do something, not having power over something. I always wanted to be a parent, to be in control, to teach my kids, and to be the reason for their success and happiness. I don't think that's fully up to me now. We are in the process of getting ABA treatment but I wonder, what his path will be.

It is natural to be disappointed and afraid. This isn't what you expected, I understand. But do not let yourself give up. Your child needs you. And not having full control, well, we never really do. Not having that does not mean you can do nothing. You must participate and learn from
the experts and from your child--but as much as you can, to choose the experts and help guide based on knowing your child and on your values.

Children are amazing. I predict that your depression may ease as you find things that reach your child. Meanwhile, play with what he likes if you can. And if you are asking yourself why and blaming yourself, STOP. This is no ones fault. Try to enjoy today and teach this to your child.

This is no one's fault.

hi,
we can only give support but its possible he is autistic and its good he has a mum?dad? who is aware enough of autism and is also willing to hear the outcome whatever it may be.
have strongly suspected the three year old niece of mine is an aspie for a long while but her mum wont hear anything of it even though she is very understanding and accepting of the spectrum now.

am thirty,and have both severe autism and mild intelectual disability and have ABA in the care home am in,was detained in a intelectual disability hospital for four months last year where was given a more extreme type of ABA;woud not wish what they did on anyone but it did
change quality of life.
am of a completely different belief to parents of severe or profoundly autistic kids as do not want to change anything about self,woud not take a cure if there ever was one,am at peace with self and have a great quality of life thanks to having a lot of support,equipment,a multi disciplinary intelectual disability & autism specialist team,a special college that am a student of,the special olympics and now rabbit therapy thanks to getting two rabbits this week.

those of us who have significant care and behavioral difficulties,ie those of us on the 'low functioning' spectrum are offered residential/care facilities as youngsters and/or adults,it isnt as bad anymore as it was with mine;had been put in a terrible institution a decade a go and am still suffering from the abuse had suffered there,now days there are organisations such as CQC that check facilities to make sure abuse isnt happening,and money isnt being stolen etc though countries differ on the quality of homes and support offered, am now able to live in a specialist care home in the community thanks to having full time two to one support-it woudnt be possible without it, in secure residential care homes,there are a few staff but they arent dedicated to individuals and these are more like baby sitting services where people just sit around wasting away and can only go out if they go out in groups; however some of us have risk assessments that says we cant go out in groups because of severe challenging behavior so we are extremely limited in quality of life.

the best option for LF adult autists is a supported living specialist care home or their own place if they cant cope with other people and their council will fund it,it will all depend on whether they will get the support they need though.
for adult HFAs who need support to live a day to day life,its a lot more harder to get but not impossible.

The safety net for what happens if your child cannot manage independently as an adult is different depending where you live. I am in the US, I think KoR is in the UK. Would you want to say what country you live in? Because the way one accesses services for children also varies of course by where you live.

Hugs -- even when you know that something is wrong, the actual confirmation of a diagnosis can be quite wrenching. My impression is that I've met more people whose child was diagnosed early and ended up fairly high-functioning than those that stayed non-communicative. I would recommend just assuming that your child is intelligent and has a good chance of becoming more responsive and communicative.

Although I'm not a fan of the way they go about fundraising with gloom and doom, Autism Speaks does have a good week by week plan of action for parents of those just diagnosed:

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

Agreed. There's a lot of helpful information on their site, but don't be discouraged by their end-of-the-world mentality. Also, it's important to recognize that they focus mostly on low-functioning autism.

The uncertainty is one of the hardest things to deal with. There is no way to know a prognosis at this point because the brain is plastic and you don't know what will happen over the course of your child's development. Kids on the spectrum do not follow the usual developmental road map, and you don't know when your child will hit spurts of development. Brains are more plastic than most people have reason to realize and the autistic brain can adapt, and learn.

My son is 8, and when he was very little it felt like I was metaphorically having to enter his world to communicate with him. Then he started to metaphorically visit mine. Now it seems seamless though we still have our issues getting our points across to one another, sometimes.

The most important thing IMO is to be there for your child and demonstrate you are trying to communicate. That trust is so important moving forward b/c your child has to trust you to be willing to try the many difficult things you will have to ask him to try to learn.

I never did any formal Floortime program,and mostly winged it at first, while I gathered information; but getting on the floor and engaging and playing was really useful to us. Enter your child's world and play his way, even if his way seems odd to you.

My son loved to stack blocks, and line up toys, and I did this with him. He liked some typical toys like sorting and stacking toys but did not like many other types that neurotypical kids, do. He played with some toys in unusual ways, too. That is OK. Play that way, with him. Don't spend all your time trying to get him to conform to the "right way." You can build rapport playing his wa, and it makes it easier, I think for autistic kids to make the leap to try things your way, sometimes, too. it may not happen right away, but you build the foundations for it.

I cannot speak about ABA b/c we never did any. Others can speak better on that. Based on others' posts, programs and therapists are of varying degrees of quality, just like anything else.

Thank you everyone for the responses. The shock is still there but is wearing off. We are hopeful and making plans. My wife will quit her job and devote her time to our son. We have applied for ABA, and I am considering enrolling him part time in daycare. I want him to be around non-autistic children if that is possible. We will maximize his care and give him 110% of our love. That's all we can do. But there is one thing that is really helping me through this. Its the idea of having a second child. I have not written off the first one, but I feel that if our family can become bigger than whatever harm that came from autism can be diluted.

Disturbing. Please explain what you mean.
Also, autism often runs in families, which means you have an increased chance of having a second child with autism.

Yes, very disturbing. Especially when read in conjunction with this earlier comment, "I always wanted to be a parent, to be in control, to teach my kids, and to be the reason for their success and happiness." Emphasis mine.

I wonder if he realizes he's speaking about people as if they are objects, and how very autistic that sounds?

Bkdad82,

This is the parent portion of a board for people with autism, so the general perspective is going to be very different from what you may have expected.

Autistic people (whose self-esteem has not been completely depleted) do not look at themselves as defective. We have obstacles and challenges, certainly, but we also look at the positives that come with having a different way of looking at things.

Your child is diagnosed solely based on the deficiencies and so that is presumably what is affecting your perspective. A diagnosis is only given if there are clinically significant delays. The people who diagnose are not going to tell you the potential, future advantages to being able to focus on special interests and that kind of thing. That makes it easy to offend here, because you are not accustomed to that perspective.

I abstained from posting at first, because I was not sure how to respond to your post diplomatically. I may still not be as diplomatic as I intend. If what you are saying is that the possibility of having an NT child will cover up the disappointment of having an autistic one, that is not going to come off well, here. Even putting the offensiveness aside, saying you wish to dilute the autism in your family by having another child is not a concept that comes off as logical. If your second child is neurotypical, that does not make your first any less autistic. As others have pointed out you could also have another autistic child.

I am not saying you should not have another child, but keep in mind that is a more difficult choice than maybe you realize. There is a hereditary element to ASD, and you have a greater chance statistically of having another autistic child than a family with an NT child. Having another child, even if NT, will dilute the time and money you will be able to devote to each child. If your wife will be staying at home, she will have that much less time and energy. Many parents here have multiple children, some with a mix of NT and ASD and some with more than one child with autism. They can tell you more about both the joys and challenges of that. (I only have one child) but I don't think any of them view it as "diluting" the autism.

Edited for literacy.

You will adjust to this, and realize that your child is wonderful in his own unique way. While my son is high functioning Aspergers (he has always been fully verbal), I am under the impression that the prognosis for the more commonly called low functioning* autistics will be highly dependent upon IQ, which is obviously something you do not know yet and may not know for a very long time, as assessing IQ in someone who won't communicate is extremely difficult. But do understand that your child's odds are better than they EVER were; I've seen some amazing things on these boards, and met some amazing adults who may not be verbal, but are brilliant (one of our non-verbal members is in graduate school for neurology).

Assuming your wife has the patience and tolerance for it, being a full time caregiver will absolutely make a difference. Just remember that not everyone is cut out for that, and there is no failure in recognizing sometimes that you can't meet all your own ideals.

Also, read, read, read and read. The more you know and understand, the smoother this road will be. I think Temple Gradin's books might be the most relevant for you right now, in this moment.

Then focus on your child. Let him be your guide. In his own way, if you are paying attention, he will tell you what he needs.

I think you've been handed a life lesson. The funny thing about life and parenting is that you can never control it. Most women are forced to let go of that notion in pregnancy; for fathers, it can take longer. I think what is most difficult for you right now is that you've been pulled off the wheel with a giant yank, instead of one finger at a time, the way most fathers are. You have to face today that you can't create your son's future, while most parents spend 18 years learning that. It is OK to mourn, so to speak, the loss of the vision/dream/fairytale, but then you have to move on. Your second child isn't going to live your vision anymore than this one will (not to discourage you from growing your family, as family is a beautiful thing, but to help you enter all this a bit more realistically).

But it will still be wonderful.

Life hands us what we need to experience and learn, not what we think we want.

I am going to ask you to start letting one more question start very slowly developing in your mind: whether or not you have some ASD genes and traits yourself. Why? Well, first, it does tend to run in families. But, secondly, the trigger in your words is that idea of control, of getting to finally do something your way. That is a trait and desire unusually prevalent among our ASD kids, and among the ASD adults in this forum. Many of us never knew that aspect of ourselves existed until our kids were diagnosed, and then, suddenly, you start to wonder.

We do have many completely NT (nuerotypical) parents to ASD children here, too, of course. On this page most of our conversations are about raising kids with ASD regardless of what the parent is like, but sometimes we also talk about the unique issues being ASD brings to parenting.

Anyway, whatever this journey brings you, I hope you will be open to richness and positive aspects of it, instead of overly focused on what you would have chosen instead, if given a choice. Like I said earlier, life hands us what we need to experience and learn, not what we think we want. But you can't get the full benefit of that if you keep you mind locked onto your own goals and ideas, or disappointments.

Best of luck to all of you.

* had to asterisk that term to note that many of our members greatly dislike the terms "low functioning" and "high functioning" because they feel there is so much more to who they are than anything these terms can suggest.

Thank you everyone who posted here. I apologize if I offended anyone. Its very hard for me to wrap my mind on this. Please understand my perspective. I am an immigrant in the US and my culture is Eastern European, so please excuse my lack of PC or etiquette, or my pessimism for that matter. No I dont have ASD although I would switch with my son without any doubt. I was very shy and antisocial as a child as has been my wife. We have zero friends, but are close to our siblings. However neither of us are autistic. I spoke as a 1 year old, and I am very sarcastic and social today. From reading Baron Cohen's theories, we do have many family members inclined towards engineering and science. We have a couple of math PHD's, several engineers and doctors in the family. I myself use math for a living. Our lives are about progress and love for each other. We also understand that its wrong to do any crime, its wrong to abuse substances, and its wrong to disrespect our parents. There is no exception, all of us have been raised without excuses or compromises. When I say control its misleading. I have had independence since I was 10. I was never walked to school, I could go anywhere I wanted to I could be friends with anyone, but I always knew right from wrong. We were treated as adults after 15 or so. We delivered newspapers, helped paint fences, and sold goods on the street. We never had unemployment. If there is no job then clean toilets. So that's my background. Its not a judgement on anyone else. Its a self description.

My son since he was born has been perfect. He is beautiful (we considered submitting him as a baby model) and everything that I held of value before him seems superfluous. The part that I struggle with is his independence. I hope he can become independent of me. That he can find happiness in this world. I worry that he will need me, but I cannot be there for him forever. This was my biggest fear before I ever had a child as have many parents. I was and even more now scared of having a child without his own life, only one that uses me as support. I would easily give anything for my son to be happy and that's why this is so difficult. Right now what keeps us sane is planning ABA, looking at diets and hoping, although as a math guy its hard to do.