Father of a recently diagnosed child with autism ( help! )

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hey all, new here to the forum and the world of autism.

My 3.5 yr old daughter has been diagnosed with mild/moderate autism. like any other parent in a similar situation, I've been doing heaps of research and stumbled upon this site.

Just a little history about my daughter. apart from a speech delay she showed no signs of autism. She said upto 10 words just before her 3rd b'day and right after that she had a traumatic experience at day care and everything changed. She was basically never apart from us and we thought after the first day of day care she would eventually settle down but that didn't happen, all she did was shut down. she stopped saying the 10 words she was saying before, she became extremely cranky, less eye contact, refused to eat like she used to before and started waking up in the middle of the nights which she never did before.

Once again autism never crossed our minds but a few weeks later when she joined pre-kindy, we noticed she was not interested to play or interact with the other kids. this is when we knew something was wrong and finally almost 2 months later we got the diagnosis.

My question is, does autism come out all of a sudden just the way it did for my daughter? anyone have a similar experience? even when we look back at home videos just before the day care incident we found she was perfectly fine with great eye contact and interaction with others and was well aware of her surroundings and in our world.

At the moment she is getting speech and behavior therapy, even thought she is not fully toilet trained she does not use a diaper and takes us to the toilet when she needs to go, but sometimes on rare occasions when she can no longer hold it she just goes. There is no major improvement with her speech but she seems to be more in our world than she was a few months ago. She is very fussy with food as well and only eats a selected variety of foods and will not try anything else.

another thing which I was wasn't aware of, my sis in law, my wife's older sis never spoke a word until she was 4 but then once she started talking she did not stop. I only recently found this out and always wondered if this has any link?

anyway that's my story so far...will keep posting updates if anyone is interested? also I've noticed there's quiet a negative reaction to stem cell treatment for autism on this forum? also does anyone know if there's a safe way of testing the mercury level in autistic kids?

You're panicing. It's not that autism "came" out all of a sudden. Your daughter is merely going through stages of development that are reflecting her unique way of thinking.

The reason she had eye contact when she did is because at that stage of her life, she had less awareness. As a person develops, she becomes increasingly aware of more things. She reached a level where she can function better by tuning others out more. You're not understanding what's going on in her little mind, so you are concerned. Trust me. She will be fine.

Your daughter will talk as she is ready. When I was very young, I was as you describe your child being. There could be a common atypical type of brain your daughter and your sister-in-law share. If so, then that's good that your daughter has a close relative she can relate to.

Of course there is going to be a negative reaction to stem cell treatment for autism on this forum. There should be a negative reaction to any mentality holding the belief that autism is something that needs to be cured. What needs to be cured is ignorance. With knowledge, understanding and acceptance will come. People fear what they don't understand and is too different. That kind of attitude isn't good for your daughter's well being. She needs to be treasured as a total package... autism included.

You will get frustrated, but be patient. This new experience is something you will look back upon differently, if you will keep an open mind to learning new things (especially from proper sources). There unfortunately is a lot of information now around that's innacurate and destructive. You need to sort out the myths from the realities, along with understanding why what goes on as it does with your daughter.

It's autism, it's not the end of the world.

Acceptance is the best cure.

Your daughter's reaction to being in day care is completely normal for the way her mind works. Think of her as being like a rare tropical fish or plant. They need a different environment than hardier fish or plants. Putting her into day care like you did is like buying a beautiful tropical fish, bringing it home, and dropping it into a tank full of nothing but goldfish. It's going to be a shock and naturally there will be a noticable reaction when compared to doing the same thing if it were a goldfish it happened to.

This world caters to neurotypical people. NTs try to force people on the autism spectrum to conform. They can do that because they dominate. What needs to be done is make room for accomodating those who function differently. We do it for blind people and those in wheelchairs, so why not people on the autism spectrum? People on the spectrum are differently enabled... not disabled.

Last edited by faithfilly on 20 Nov 2011, 1:13 pm, edited 3 times in total.

Welcome Autismdad2011 you will get lots of good advice here, some you won't like and some that will be very helpful. Good luck!

Faithfilly can you come to my son school I have been trying to explain his differences until I am blue in the face at this stage I feel NTs are disabled in understanding.

I would travel the world to explain what I know, but not only does it cost money I don't have, it also would be futile for the reason you've stated... NTs are disabled in understanding, given the way society operates.

The only reason why my NT husband and NT daughter reached the levels of understanding they have is because of how much we've been around each other. It takes a lot of time and motivation to communicate all there is about this subject.

My (now deceased) father was an Aspie. I have an Aspie son and also an Aspie grandson (my granddaughter is NT). The kind of mixture my family is makes for an ideal educational system in regard to sorting out what's what in neurologically diverse thinking. Accurate books and articles on the topic help. The Aspies define the books... NOT the books define Aspies.

People, in general, have become so ingrained in their belief that unless information is coming from someone with a Ph.D., they foolishly think it's not worth listening to.

faithfilly, thank you so much for taking the time to reply. your words are very encouraging and has cleared up so many questions I had in my head. This is our only child and we are doing everything we can to help her and support her in every way we can. We love her and we know she is destined for great things in life and we will help her in this journey. I wish there were more people like you who could speak to parents of children newly diagnosed with autism. thank you once again.

I know its not the end of the world. I had some questions that needed answers like any concerned parent would. I am not looking for a cure, we accept what our child that the way she is and nothing in this world would change it.

Welcome to Wrong Planet! Most of the parents here have children with Asperger's and so do most of the people on the main board who wander into the parents section from time to time to comment. Because for many of them their only experience with autism is Asperger's sometimes their suggestions can be a bit off base (with some exceptions). There are a handful of of parents here who have more classically affected children. My son is 3 1/2. He had about 20 words and stopped talking altogether at about 18 months and it was 6 months before he very slowly started learning words again. Now he can label a lot and has his favorite shows memorized but still doesn't have much in the way of communicative language. We have our own little corner of the parent's section at the top of the list called "RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays". I'm sure everyone who posts in there would love to hear from you.

Hang out here, ask lots of questions!

Remember, it is the first couple years that will be the hardest. It gets better!! When they are young with little language, it can be difficult to try to figure out what they need and what will work best. You have your share of frustration ahead, but you also have many magical moments where you will connect with your child, and see how incredible they truly are.

Keep us updated!

thanks for the comments guys. will surely keep you posted on the progress.

Washi, thanks for pointing out the RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays section, I had failed to notice it while browsing this section of the forum.

I'm nearly 24, female, classic autism...

I would say that your daughter was already autistic before the trauma, because she was severely speech delayed. I think, in time, you'll find other little signs that pointed to autism where you didn't see them before (this is what happened for my mom).

Trauma can indeed cause regression, and it sounds like this is when the autism became more apparent.

My recommendation is that you read some blogs by adult autistics. I have one (www.autisticspeaks.wordpress.com), but I could care less if it's mine you read or not. You'll learn so much... one girl just posted on hers something about how "Quiet Hands" was totally abusive to her as a child, and how she reacts to hearing it now, how much power it holds over her.

While we have a lot of challenges, most of us want to be who we are and don't want to be made to be "normal," you know? My way of saying it is that I want to build on my strengths and ameliorate my weaknesses, arriving at a stronger self, while still being totally Lydia and totally autistic.

Hi lydia, I guess you are spot on with the speech delay. but at that point autism did not cross our mind but I am glad we have more awareness now. and yes, just to let u know I have been reading your blog for quiet sometime. fairly sure I replied to one of your post a few weeks ago, cant remember which one though..but will continue to keep reading.

SuperTrouper made the point I thought of when I read the first post: even though it wasn't obvious to you, it sounded very likely that your daughter was showing signs of potential autism before the daycare incidence. The regression from the incidence simply made it more obvious.

Regression is quite common with all forms of autism, regardless of the person's place on the spectrum. Sometimes there seems to be a trigger, but sometimes it just is the pace of the unique individual's development. What you can't do is obsess over the relationships of A to B, it will simply drive you nuts, or send you to very wrong conclusions, because much of it IS coincidence. While there definitely are relationships between action and reaction we look for to help us parent and make choices, there is no better way around it, you always have to be mindful that nothing is happening in an isolated box, and all conclusions are tenuous.

From what I've read, the type of mercury testing generally done with autism is unreliable. I'd be wary of going down that road; there is too much bad science and hocus pocus medical practice connected to mercury theories.

Anything with stem cells is still highly experimental. I haven't been following it, but worry about diverting resources and causing your child stress for what is probably a pipe dream. If sticking to a conventional road is likely to yield strong and promising results, why go there? It sounds to me like your daughter is a good starting position, she isn't that far withdrawn into her own world to make you take big risks. Just IMHO.

What does work is knowing your child and honoring her needs. We're also seeing really good results with ABA therapies, speech intervention, and OT. But I would say that the key is dedicated parents putting their energy and attention into that child. There are several classically autistic children I've been able to watch from 1st grade into high school, and I am so impressed ... this isn't a prior generation's autism. My son is high functioning Aspergers, but even from that high starting point, he is exceeding expectations, to hear his teachers et al tell it. The investments seem to be paying huge dividends.

You've got to believe in what is possible. The road is long and intense, but so worth it.

Best of luck with your beautiful daughter.

And ... the sub-community WP has in the Classic Autism, PDD-NOS thread is lovely. Take a look

DW is right with respect to regressions.

Sometimes they're caused by an upset in routine; my mom went on vacation for 2 weeks in October, and I had some temporary regression while she was gone.

They can be physical. Due to arthritis (we think it is JRA/Still's disease), I've been running fevers at night, and when I have the fevers I am a bit of a behavioral mess. I whine and groan and make lots of noise with little functional speech. I need lots of sensory input, so I'm often hitting my head or rolling around on the floor or taking two showers each evening just for the input. When I have the fevers, I regress.

My communication waxes and wanes, and I have weeks where I do fairly well (for me) and weeks were I'm not really that verbal. This is related to the degree to which sensory issues are affecting me.

And then there's the fact that, for my teenage years, I presented as mildly autistic.... and now you just wouldn't call me mild under any circumstance. I don't drive, I don't really live independently, I have staff, etc. I'm just more affected than I was, because I've regressed... and who knows why.

Just keep in mind that autism is not a constant thing. Pretend, for a second, that any one trait of autism (self-help skills, communication, social skills, sensory, etc) can be described by numbers 1-9... 1-3 are severe autism, 4-6 are moderate, and 7-9 are mild. So a child might be a 4 for self-help, 7 for communication, 5 for social skills, and 9 for sensory. A few years later, all of those numbers might have changed, and the overall average could either be exactly the same or wildly different. Autism does not affect a person constantly throughout her life. Your daughter might have had an average of 8, and after the trauma and subsequent regression, have an average of 5. A few years later, that can change yet again.