Moms of Autistic Children

contingencyplan

i have had two of my kids tested for autism. my oldest son is 14 and diagnosed with pdd-nos. i have to say.. he has come a LONG way and even though we have all the teenage crap to deal with now.. he has friends, he is social, and alot of his weird ways (circling, hiding, lining things up) have mostly gone away.

my younger boy didnt talk, or have eyecontact at all as a baby.. didnt like to be touched and had all the flags.. he was in early intervention and we taught him to use sign language at an early age to help communicate. he is now very smart, straight A student.. has friends (although not alot) and does very well.

early intervention is the key for sure.. feel free to pm me or friend me or both.

There must be something to all of this early intervention stuff because I wasn't diagnosed until adulthood and as a result I still have all these tendencies as a 32 year-old man.

tikafly

I knew something was "off" with my daughter since birth. At around age 2, we had her screened by early intervention. They found a mild delay, and said she could be on the spectrum. Upon further evaluation, we concluded that she is NOT autistic. Still struggling with some things at age 8 and worsening to the point where it affected her grades, she was evaluated again. Though my instinct always "knew" this was the culprit, she was diagnosed with ADHD. Ten months later, we have found a great med for her, she is in the gifted class in school, and she made the competitive soccer team. She is *thriving* in ways that i never though possible just one year ago. The moral if the story: trust your instinct, advocate for your child, and do not put much mind into labels.

Robin1117

i have had two of my kids tested for autism. my oldest son is 14 and diagnosed with pdd-nos. i have to say.. he has come a LONG way and even though we have all the teenage crap to deal with now.. he has friends, he is social, and alot of his weird ways (circling, hiding, lining things up) have mostly gone away.

my younger boy didnt talk, or have eyecontact at all as a baby.. didnt like to be touched and had all the flags.. he was in early intervention and we taught him to use sign language at an early age to help communicate. he is now very smart, straight A student.. has friends (although not alot) and does very well.

early intervention is the key for sure.. feel free to pm me or friend me or both.

so great to hear stories like this, thank you!

fascinating thread.

I have a son who is going to be 8 next month. Never saw any red flags--talked early, has always been social. Loved people. Loved everything. But when he first started pre-k, we first learned about his "coping issues" and some sensory issues w/loudness. They gave him an early "probable" diagnosis of AS, but the line was really grey, and we thought subjective. Basically, we figured it was all behavioral, because we have just one child, and when I was working he had a babysitter who just did what he wanted to do, all the time. We figured it was just a reaction to being in a group setting and having to not always do as he liked. Anyway, we took the speech language help, PT help, etc, and he has been making great gains since, without a formal diagnosis, but getting an IEP under "early ed" criteria. Then in April, they just had to do a re-evaluation to see if he could continue to receive services. The bottom line--he's brilliant. But they still believe he has an AS, so I guess it's a formal diagnosis now. We are coming to terms with this, we started him in camps and social skills groups. He has a 504 plan in school now because his cognitive abilities are too strong for an IEP qualification. I'm not quite sure of what we are losing w/this change yet, so need to figure this out.

We haven't told him a thing about a diagnosis--but figure when the time is right, we can discuss his strengths and weaknesses..... because honestly, that's all this is....some things he's good at, some things need work, and we are going to address them. I'm not sure when the term "aspergers" will come up.

What struck me in the post above is that you are going through the teenage years and still seems A-ok! And that makes me feel good because I feel like my son is fine now, but we keep hearing it gets worse before it gets better- w/the hormones and the fact that it's tough for these kids to understand all the non-verbal language that comes into play as kids get older....I just want my little guy to keep his friends, be a good friend, and be happy, and stay focused so he can put his great brain to use going forward....

Oh, and just want to mention, about diet--my son has a severe peanut allergy, so along w/dealing w/this challenge, I have to deal w/keeping him safe on this level too w/his diet......we haven't tried any GFCF tests or anything though.....that's kind of interesting.

Anyway, look forward to more insight from this post...

Akimajuktuq

Hi Everybody.

My child is not autistic; however, I follow this issue closely and do a lot of research in regards to health, nutrition, medical treatment, contaminants, etc. I'm doing what I can to be an advocate for parents with autistic children and standing up against the things that I believe have led to the increase of this disorder and the lack of full disclosure, proper treatment, etc on behalf of the authorities.

My heart and prayers are with all of you!

dolly3186

My mom tells me it was pretty obvious with me beginning at around a year old. I wasn't nonverbal, but I would go days at a time without speaking until I was in like 3rd or 4th grade. I still do hand-flapping, rocking, and other forms of stimming.

It's nice to have someone else's point of view on this matter. I'm not sure if this is getting too personal or not, but I'm extremely curious as my son can't tell me what he's feeling/thinking...why do you do all the hand-flapping, rocking and stimming etc.? I'm not trying to make light or anything, I just honestly am 100% curious. My son is only 18 months and he does a lot of hand flapping and this stimming thing where he flicks his fingers over and over near his mouth...also this scratching thing.

Just curios on your perspective as to why? Does it calm you down? What are you thinking as you're doing those things? Again, if this is too personal or you're uncomfortable, please feel free to ignore this post or message me privately.

dolly3186

Hi Everybody.

My child is not autistic; however, I follow this issue closely and do a lot of research in regards to health, nutrition, medical treatment, contaminants, etc. I'm doing what I can to be an advocate for parents with autistic children and standing up against the things that I believe have led to the increase of this disorder and the lack of full disclosure, proper treatment, etc on behalf of the authorities.

My heart and prayers are with all of you!

Thank you! It's been so amazing hearing all the support and stories from everyone on this thread.

Akimajuktuq

Hi, Obviously I am not a mom but my son is 7.5 yrs old and is high functioning autistic. He is very stubborn and will not try many foods. Normally he eats junk. I was wondering if anyone here has any experience getting their child to: 1. Eat and 2. Eat something more than nutella.

Thanks

I was HORRIBLE with eating new foods. I ate hot dogs, fries, mac n cheese, and chicken nuggets. That was pretty much it. Oh and candy. I came around to eating healthier when I got older when I noticed I was getting super fat. Sometimes they have to realize it on their own. Or you have to present something new in a similar way to something he already likes. It's how they got me to eat sausages, "It's like a jumbo hot dog!" Then I ate it and liked it.

Thank you for sharing your experiences. It gives me some insight into what Jackson is thinking. His diet is terrible...cereal, peanut butter, french fries, yogurt, sweetened apple sauce, hot dogs. I have been able to get him to take bites with a lot of prompting!! He says he likes it but won't really eat it. It is all similar foods too. He is 9...I have hope for a more balanced diet!

Children can only eat the foods that we provide for them (at least while they are little!). If these foods aren't available, they would learn to eat other foods. As parents we can, and have the right to, control what our children eat. Children will NOT starve to death when denied junk food, but they may be stubborn enough to skip a few meals. Try lots of different healthy foods and in different recipes; you will find healthy things they like, I promise, but not if they still have the choice to have junk instead.

There are lots of parents that have had amazing progress with their autistic children when they have implemented a very strict, healthy diet. Doctor's don't always promote this because they just don't know much about nutrition. (Also, "healthy" is the key word, our current diet recommendations are not healthy for most people imo.)

It's worth looking into and trying the dietary approach imo. Worst case scenario there is no change. Of all the people that I know who tried the dietary approach, all have had success to some degree; sometimes amazing success.

I'm doing it with my child, even though she's not autistic. Yup, there is some resistance, but overall she is quite excited to be "eating like a dinosaur". It's totally my fault that I slacked as a parent and let her get used to all those sickening "foods" (they made me fat and sick too), so it is harder to make the change then if I started out healthy from the start.

contingencyplan

My mom tells me it was pretty obvious with me beginning at around a year old. I wasn't nonverbal, but I would go days at a time without speaking until I was in like 3rd or 4th grade. I still do hand-flapping, rocking, and other forms of stimming.

It's nice to have someone else's point of view on this matter. I'm not sure if this is getting too personal or not, but I'm extremely curious as my son can't tell me what he's feeling/thinking...why do you do all the hand-flapping, rocking and stimming etc.? I'm not trying to make light or anything, I just honestly am 100% curious. My son is only 18 months and he does a lot of hand flapping and this stimming thing where he flicks his fingers over and over near his mouth...also this scratching thing.

Just curios on your perspective as to why? Does it calm you down? What are you thinking as you're doing those things? Again, if this is too personal or you're uncomfortable, please feel free to ignore this post or message me privately.

Certain sensory inputs are calming. Swinging motions, sudden direction changes, they're calming. That's why the clean is my favorite barbell exercise. The way you have to flick your wrists up at the end of the clean to support the weight satisfies that same sensory need. A lot of the time I end up doing these things without realizing I'm doing them, however.

perfectingpatti

It's nice to have someone else's point of view on this matter. I'm not sure if this is getting too personal or not, but I'm extremely curious as my son can't tell me what he's feeling/thinking...why do you do all the hand-flapping, rocking and stimming etc.? I'm not trying to make light or anything, I just honestly am 100% curious. My son is only 18 months and he does a lot of hand flapping and this stimming thing where he flicks his fingers over and over near his mouth...also this scratching thing.

Just curios on your perspective as to why? Does it calm you down? What are you thinking as you're doing those things? Again, if this is too personal or you're uncomfortable, please feel free to ignore this post or message me privately.

My son said most of the time he doesn't even know he's flapping his hands or twitching. When we ask him, he says it calms him down. We tried giving him a stress ball for school so the kids wouldn't see him flapping. He says that works okay for him. He likes the repetitive nature of certain movements. Right now, he's moving his eyeballs to make the figure 8. The good thing about David is I can redirect him to another movement. The eyeball thing is kinda freaky looking!

perfectingpatti

It's nice to have someone else's point of view on this matter. I'm not sure if this is getting too personal or not, but I'm extremely curious as my son can't tell me what he's feeling/thinking...why do you do all the hand-flapping, rocking and stimming etc.? I'm not trying to make light or anything, I just honestly am 100% curious. My son is only 18 months and he does a lot of hand flapping and this stimming thing where he flicks his fingers over and over near his mouth...also this scratching thing.

Just curios on your perspective as to why? Does it calm you down? What are you thinking as you're doing those things? Again, if this is too personal or you're uncomfortable, please feel free to ignore this post or message me privately.

My son said most of the time he doesn't even know he's flapping his hands or twitching. When we ask him, he says it calms him down. We tried giving him a stress ball for school so the kids wouldn't see him flapping. He says that works okay for him. He likes the repetitive nature of certain movements. Right now, he's moving his eyeballs to make the figure 8. The good thing about David is I can redirect him to another movement. The eyeball thing is kinda freaky looking!

opuntia

I'm also on the autism spectrum, and with regard to stimming, different things are calming to different people, depending on whether you're hypo- or hyper- sensitive (undersensitive or oversensitive). I have an autistic friend whose vestibular system is hypo-sensitive, so he craves a lot of movement, and likes things like roller coasters and merry-go-rounds. But my vestibular system is hyper-sensitive, so I crave stillness, because I get dizzy very easily. I will walk for miles rather than take the bus, because even the motion of the bus makes me dizzy. But I like trampolines - up and down motion is very helpful for me, for some reason. But side-to-side motion, going round corners, spinning, etc, all make me dizzy. The kind of sensory stuff I do to help myself not get overwhelmed is self-massage, listening to calming music, burning aromatherapy oil, having hot bubble baths. Also, here is a good tip. Weighted blankets are very good, but also very expensive - you can achieve the same effect by simply using regular blankets, but tucking them tightly into the bed. This provides pressure, which helps improve relaxation and sleep.

contingencyplan

I'm also on the autism spectrum, and with regard to stimming, different things are calming to different people, depending on whether you're hypo- or hyper- sensitive (undersensitive or oversensitive). I have an autistic friend whose vestibular system is hypo-sensitive, so he craves a lot of movement, and likes things like roller coasters and merry-go-rounds. But my vestibular system is hyper-sensitive, so I crave stillness, because I get dizzy very easily. I will walk for miles rather than take the bus, because even the motion of the bus makes me dizzy. But I like trampolines - up and down motion is very helpful for me, for some reason. But side-to-side motion, going round corners, spinning, etc, all make me dizzy. The kind of sensory stuff I do to help myself not get overwhelmed is self-massage, listening to calming music, burning aromatherapy oil, having hot bubble baths. Also, here is a good tip. Weighted blankets are very good, but also very expensive - you can achieve the same effect by simply using regular blankets, but tucking them tightly into the bed. This provides pressure, which helps improve relaxation and sleep.

This is what I do at night. I tuck it tightly into the edges. Weighted blankets are WAY too expensive. I like my motorcycle because it handles very well and I like the feeling it of flicking it from side to side in turns. I also like the feeling of jumping up and down.

_VoV

My children (now ages 20 and 17) are not autistic, since we never sought diagnoses, but they definitely have worried me.

Both have stimmed over the years--hand flapping, chewing shirt collars, pirouetting across the room, and swinging on a swing for hours a day. Both were picky, and self-restrictive about their food, and to some extent still are.

My firstborn had classic symptoms of autism in his first few years of life: gaze aversion, lack of gesturing (no waving bye-bye, or pointing), no babbling, and no speech whatsoever (not even Mama or Dada) until he was almost three. My secondborn met early developmental milestones pretty much on schedule, but still had some signs that not all was well.

So what did we do? We treated them like normal kids, home schooled them, and taught to their strengths. I can't know where the road not traveled would have brought us--probably the same place. I'm not advocating anyone follow our path, since so many things work.

Everything seems to be working out great. They both did early college, and have friends. My worries are so much less now because they are finding their way in life.

Wishing you all the best! Love can make a big difference all by itself.

OnionMomma

Hi, Obviously I am not a mom but my son is 7.5 yrs old and is high functioning autistic. He is very stubborn and will not try many foods. Normally he eats junk. I was wondering if anyone here has any experience getting their child to: 1. Eat and 2. Eat something more than nutella.

Thanks

I was HORRIBLE with eating new foods. I ate hot dogs, fries, mac n cheese, and chicken nuggets. That was pretty much it. Oh and candy. I came around to eating healthier when I got older when I noticed I was getting super fat. Sometimes they have to realize it on their own. Or you have to present something new in a similar way to something he already likes. It's how they got me to eat sausages, "It's like a jumbo hot dog!" Then I ate it and liked it.

Thank you for sharing your experiences. It gives me some insight into what Jackson is thinking. His diet is terrible...cereal, peanut butter, french fries, yogurt, sweetened apple sauce, hot dogs. I have been able to get him to take bites with a lot of prompting!! He says he likes it but won't really eat it. It is all similar foods too. He is 9...I have hope for a more balanced diet!

Children can only eat the foods that we provide for them (at least while they are little!). If these foods aren't available, they would learn to eat other foods. As parents we can, and have the right to, control what our children eat. Children will NOT starve to death when denied junk food, but they may be stubborn enough to skip a few meals. Try lots of different healthy foods and in different recipes; you will find healthy things they like, I promise, but not if they still have the choice to have junk instead.

There are lots of parents that have had amazing progress with their autistic children when they have implemented a very strict, healthy diet. Doctor's don't always promote this because they just don't know much about nutrition. (Also, "healthy" is the key word, our current diet recommendations are not healthy for most people imo.)

It's worth looking into and trying the dietary approach imo. Worst case scenario there is no change. Of all the people that I know who tried the dietary approach, all have had success to some degree; sometimes amazing success.

I'm doing it with my child, even though she's not autistic. Yup, there is some resistance, but overall she is quite excited to be "eating like a dinosaur". It's totally my fault that I slacked as a parent and let her get used to all those sickening "foods" (they made me fat and sick too), so it is harder to make the change then if I started out healthy from the start.

^^ I will have to respectfully disagree with the above. I help moderate an online forum for tube fed children specifically in their feeding aversions forum. I poured 18-24 months into my son with early intervention and 2 feeding clinics to "teach" him to eat.


I had a tube fed child with feeding sensory oral issues due to prolonged tube feeds due to several medical issues. He would have gladly starved to death. They really will. It's hard for people who have not dealt with this to understand this though.

The harshest things that were ever spoken to my face, I'm sure much worse was said behind my back, was that if I stopped using my son's tube, he would eventually eat. And.... if he spent a weekend at my house, I'd get him to eat.

Like I was some HUGE failure or something.

Our O.T. (occupational therapist) through Early Intervention (e.I.) was sent to a seminar to learn about a program of helping to teach infants and children to eat. There she learned about a method called. Food Chaining. I cannot stress enough how much this changed our lives.

The book is GREAT. It's worth every penny and it's not that expensive.

We were able to take our son's limited diet and expand it based on the books suggestions and the things our OT learned at the seminar. I am almost positive it has a whole chapter dedicated to Autistic children. It is highly common for autistic children to be HIGHLY food selective. Meaning, they will eat chicken nuggets *but* they must be McDonald's brand or some other brand. No others will go down the hatch. This program deals with that.

I have worked in the public school system at a substitute and a long term sub teaching autistic children, it is what I eventually want to do. I am planning on going back to finish my Master's in SPED.

The earlier the better when it comes to therapy for autistic children. For any child with any type of delay actually.

Our son's Ped. Office does autistic screenings at starting at the 1 years old well check. From there they continue until 2.5 I think.

When they told me at 1 they were going to do an autistic screening with him, I was nervous. As an educator, I would hoping i would catch these things. It all came out fine, but I wish MORE doctor's offices would do this.

I've seen firsthand the devastation on a set of parents when at 5,6, or even 7, they are told their child is autistic.

OnionMomma

I should add to help you all to understand the starving to death thing.....

Think of the most disgusting foods you can imagine, the texture is nasty, the smell is horrid, the color is awful. Now imagine that every fiber of your body is SCREAMING to not *touch* it let alone taste it.

Then, imagine like my son, that at around 16 weeks old was in soo much pain due to very severe GERD that every time he ate, he felt awful as well from his heart not functioning.

Imagine that every time you do get hungry enough to try and eat something, you get a electric shock or something else really horrid happens to you externally (to represent the GERD)

Then you begin to understand why and how some children with medical issues like my son, or Sensory Processing Disorders like Autistic children will gladly starve if not given their preferred foods, or in my son's case, given his tube feeds to sustain life.

opuntia

I should add to help you all to understand the starving to death thing.....

Think of the most disgusting foods you can imagine, the texture is nasty, the smell is horrid, the color is awful. Now imagine that every fiber of your body is SCREAMING to not *touch* it let alone taste it.

Then, imagine like my son, that at around 16 weeks old was in soo much pain due to very severe GERD that every time he ate, he felt awful as well from his heart not functioning.

Imagine that every time you do get hungry enough to try and eat something, you get a electric shock or something else really horrid happens to you externally (to represent the GERD)

Then you begin to understand why and how some children with medical issues like my son, or Sensory Processing Disorders like Autistic children will gladly starve if not given their preferred foods, or in my son's case, given his tube feeds to sustain life.

This is a good post. Many autistic kids will simply not eat if what is offered is repellant to them for sensory reasons, and they will become malnourished. Another thing to add is that people on the autism spectrum have so much sensory stuff going on that it's overwhelming and as a result they may not recognise individual sensations like hunger. Or needing the loo, as another example - I used to often wet myself as a child, becuase I didn't realise I needed the toilet. I also never knew when I was hungry. My mother expected me to be responsible for preparing my own meals by the time I was 15, and I often simply forgot, because I wasn't aware of feeling hunger. I was very underweight and weak, and often fainted.

It is possible to train oneself to recognise these feelings if you are high functioning - but it's much easier as an adult, because you can then control your sensory environment to some extent.

Debbe2

I agree that 15 months is a little young and he could be simply not talking yet. You are doing a wonderful job however in getting your son early intervention and dealing with any issues at a young age. My husband and I did the same for our son who is now 22. Although he still has issues he is out in the world working and going to community college. Always trust your gut instincts and also seek the best professional help you can is my best advice. Your son will need consistency and patience and love which I'm sure you have in abundance. :flowerforyou:

OnionMomma

I should add to help you all to understand the starving to death thing.....

Think of the most disgusting foods you can imagine, the texture is nasty, the smell is horrid, the color is awful. Now imagine that every fiber of your body is SCREAMING to not *touch* it let alone taste it.

Then, imagine like my son, that at around 16 weeks old was in soo much pain due to very severe GERD that every time he ate, he felt awful as well from his heart not functioning.

Imagine that every time you do get hungry enough to try and eat something, you get a electric shock or something else really horrid happens to you externally (to represent the GERD)

Then you begin to understand why and how some children with medical issues like my son, or Sensory Processing Disorders like Autistic children will gladly starve if not given their preferred foods, or in my son's case, given his tube feeds to sustain life.

This is a good post. Many autistic kids will simply not eat if what is offered is repellant to them for sensory reasons, and they will become malnourished. Another thing to add is that people on the autism spectrum have so much sensory stuff going on that it's overwhelming and as a result they may not recognise individual sensations like hunger. Or needing the loo, as another example - I used to often wet myself as a child, becuase I didn't realise I needed the toilet. I also never knew when I was hungry. My mother expected me to be responsible for preparing my own meals by the time I was 15, and I often simply forgot, because I wasn't aware of feeling hunger. I was very underweight and weak, and often fainted.

It is possible to train oneself to recognise these feelings if you are high functioning - but it's much easier as an adult, because you can then control your sensory environment to some extent.

^^YES, the voice of someone who lived through it.

My son is not autistic but due to his medical issues we dealt with for 2.5 years and 8 surgeries over about 4 years, we had to "teach him" to eat.

He too does not recognize even now at almost 6 that he is hungry. He eats because it's on his daily list of things to do, it's scheduled. We keep him on the schedule and all is well. When we recognize that his weight gain is slowed or stopped for a period of time, we up the amount of calories we want him to take in.

So far it's worked great. He started ADHD meds and has not seen the normal weight loss that lots of kids do who eat when they are hungry. His "scheduled" eating his eliminated that issue.

Elzecat

Hi Everybody.

My child is not autistic; however, I follow this issue closely and do a lot of research in regards to health, nutrition, medical treatment, contaminants, etc. I'm doing what I can to be an advocate for parents with autistic children and standing up against the things that I believe have led to the increase of this disorder and the lack of full disclosure, proper treatment, etc on behalf of the authorities.

My heart and prayers are with all of you!

Thank you! It's been so amazing hearing all the support and stories from everyone on this thread.

While I don't have children of my own, I am a former preschool special education teacher and early intervention home therapist...feel free to message me. My recommendation to parents is to educate yourself in how to navigate the "system" in order to get your child's needs met. Also to remember that your kiddo is the same post-diagnosis as he is before diagnosis--autism is just a label that will hopefully help your child get his educational and medical needs met. Don't let it completely define your child.

Whoever said "if you've met one child with autism...you've met one child with autism" is correct--because it's a spectrum disorder kiddos may have some similarities but can be incredibly different.

It sounds like you'll have lots of great support from this group

dolly3186

Any new news anybody? Anything going on?

Just to keep everyone updated - my little guy DID get an Autism Spectrum Disorder diagnosis. He's 18 months old now.

We're working with TONS of therapists and am getting him started in ABA therapy right away.