Regression and Plateaus - Share Your Experience

In our June 2008 IAN Research Report, we present findings on regression and developmental plateaus. Fully 54% of the children with ASD participating in IAN experienced either a loss or stagnation of skills.

Did your child regress or hit a developmental plateau? Share your story here.

My daughter is 23 and back in the day, the autism diagnosis was not given out easily. She is autistic. If you ask many parents, they may have video recordings of their child in speech therapy or something similar. The difference between my daughter today and the child of 30 months is astounding. She lost skills continuously until 12 years old and today is very low functioning developmentally. I think many parents would gladly share video tapes of their children at an earlier age which could be used to measure the words, the responsiveness, etc against their behavior today. This may give you less anecdotal information and more measurable data.

It is very sad to see what she once could do and how low functioning she is today.

While I reported a loss of expressive language that was very clear and momentous -- my son had about half a dozen words and then literally went mute at about 18 months (I remember exactly when it happened) -- I think it's important to note that up until then his development was just not quite typical. He reached milestones like sitting, crawling and walking on the late end of the normal range, yet I couldn't help but notice that he just didn't seem all that interested in reaching those milestones, if that makes sense. While he was able to engage with people close to him, he often acted completely oblivious to strangers and was either over- or under-reactive to outside stimuli. For example someone could pop a balloon in his face and he would appear not to notice. Or he would get excited and agitated about a far-off train whistle that most people could barely hear. Or we'd participate in a mom-baby music class and he would walk the perimeter of the room and barely participate. I couldn't put my finger on it at the time -- and people said I was crazy to think anything was wrong -- but he just didn't engage with the world like most other kids seemed to. Thankfully he eventually regained his words and has been improving over the years with lots of therapy but those days were very scary indeed.

By the end of last year Auggie was reading at a 2nd grade level (he was in 1st grade going into 2nd grade) however he regressed completely during the summer and it took him up till March of this year to get back all his reading skills. He also regresses when it comes to swimming.

My son was able to talk very well until he turned 14mnths. and had to have tubes put in his ears for the second time. The doctor's kept telling me that him loosing his words was normal and that the ear pressure had to get back to normal. The doctor's also said that the fluid that was in his ear drums effected how his language was heard and recieved. I waited till past his 3rd birthaday while taking him to every well child visit and sick visits and everytime I asked if this was normal and was hand-flapping normal and him not grasping my hand anymore, and not being able to draw a circle and hold the pencil like he once did. They told me I was over worried and that it would come back until they finally listened and he was diagnosed with Autism and Developmental delays. It all started around the surgery and his last MMR shot.

My grandaughter was diagnosed with Autism and sensory integregation at about 4years old. February 23rd of this year her mommy died suddenly at home from a heart attack. Her daddy is incarcerated. Since,she has experience extreme emotional upsets during the transition to different famly members as we try to get her permanantly settled, which right now is taking place in the home of my daughter, who is taking custody.

Problem is she is considered high functioning, but now seems to regress in some areas such as her toilet habits, sometimes wets the bed, played in her bowel movement really making a mess, she falls out alot in public places, sometimes acts out, crying, screaming, trying to abuse herself etc during her tantrums which can last for sometime. Gets extremely upset sometimes in the car.

Is this a real problem for her medically?

Hi Nana Smith.

I'm so sorry to hear what a difficult time your family and your granddaughter are going through.

If I recall correctly, she is 7 at present, isn't that right?

The behaviors you describe -- such as playing in one's bowel movement and having dreadful meltdowns -- do occur in children with autism. The thing to keep in mind, though, is that your granddaughter has also been through a significant trauma and disruption of her life due to the loss of her mother. Many children without autism may regress (say, by starting to wet the bed again years after they were toilet trained) after experiencing a significant emotional trauma.

In addition, a huge disruption which interrupts every known routine (like the loss of a parent and having to live with new people) would be even more upsetting for a child with autism than a typical child. Individuals with autism seem to crave sameness and resist change, so all these changes at once in your granddaughter's life may be a large part of what is leading to increased frequency and intensity of tantrums.

If you feel there may be any medical concerns or physical issues connected to what is going on, an appointment with your pediatrician is called for. In addition, it would probably be a good idea to consult a therapist, counselor, or other wise professional who has knowledge of children with autism, how children respond to trauma in their lives, and how to help your family reduce the negative behaviors, replacing them with positive ones. It is likely at the very least that establishing a new routine, a new "normal day", will be part of this.

To read about children with autism and meltdowns, go here:

http://www.iancommunity.org/cs/challenging_behavior/mood_instability_and_meltdown

To read about children with autism and insistence on sameness, go here:

http://www.iancommunity.org/cs/challenging_behavior/insistence_on_sameness

Mama 24-
My experience with autism sounds exactly what you went through. My daughter is 25,for years she appeared much more "normal" with some developmental delays. At age 2 and a half she didn't even qualify for a "special preschool". Now she has no language whatsoever and no social skills. It really IS sad to see pictures, videos, etc. of long ago!

I am glad that I found this site. There is alot of helpful information here. My son is 4 years old and he could say about 7 words when he was about 1 year old. He just gradually quit talking and didn't interact like typical children do. We thought that he had a hearing problem because he wouldn't even turn his head when we called his name. He started having seizures about that time and had them for about 1 1/2 years until we took him to Johns Hopkins and he was put on the ketogenic diet. He then became seizure free and is off the diet. It wasn't until we got his seizures under control that we got the diagnoses of autism. He still hasn't got his speech back, but he will say a few words, but mostly just mumbles them. He seems to understand some things when I talk to him, but not sure how much.

I have heard that children who had language before they lost it usually get it back, does anyone know if that is true? Anyone experienced seizures and autism like us?

momofcorey

Hi momofcorey.

You had asked whether children who lose language may get some back. The answer is: Yes, it is certainly possible to regain some language. In one study that explored this question, they found 61% of the 196 children participating did recover some language, although only one child made such a significant recovery that his speech was deemed "normal." 15% of the children also had a history of seizures.

See the study abstract, here: http://www.ncbi.nlm.nih.gov/pubmed/12882529?dopt=abstract

I am so glad to hear that your son is now seizure free.

If any of our readers would like to learn more about seizures accompanying autism, please see our "Additional Aspects of Autism" page, here:

http://www.iancommunity.org/cs/autism/additional_aspects

Esmom wrote:

While I reported a loss of expressive language that was very clear and momentous -- my son had about half a dozen words and then literally went mute at about 18 months (I remember exactly when it happened) -- I think it's important to note that up until then his development was just not quite typical. He reached milestones like sitting, crawling and walking on the late end of the normal range, yet I couldn't help but notice that he just didn't seem all that interested in reaching those milestones, if that makes sense. While he was able to engage with people close to him, he often acted completely oblivious to strangers and was either over- or under-reactive to outside stimuli. For example someone could pop a balloon in his face and he would appear not to notice. Or he would get excited and agitated about a far-off train whistle that most people could barely hear. Or we'd participate in a mom-baby music class and he would walk the perimeter of the room and barely participate. I couldn't put my finger on it at the time -- and people said I was crazy to think anything was wrong -- but he just didn't engage with the world like most other kids seemed to. Thankfully he eventually regained his words and has been improving over the years with lots of therapy but those days were very scary indeed.

OMG! So similar to my boy. My son could do shape sorters lickety split...in minutes, then one day, it took him 2 hours to complete getting one shape in the hole. He had started potty training, and then stopped. It literally took about 4 years to potty train him. Even now, 15 years later, he learns something and if anything changes, he has to relearn it all the time. His application and social skills are non-existent, and he can't form sentences easily. But he is very smart. And by smacky, every rule he knows by heart. LOL. Some of the most important things are lost, while things that seem insignifigant to others seem to become all-important. Gotta love the challenge of learning with them.

After reading about oxidative stress, I wonder if this is something that triggers a regressive time. My child continues to go through her periods of regression. What triggers this downfall of loss of skills and behavior. I can always tell when she starts to regress. Her muscle tone weakens, she starts drooling, she becomes anxious. Here we go again!

My ds was counting to 16, knew his colors, and shapes, could hold a pencil, could eat easily without assistance, imitated animal sounds he heard, knew the difference between a helicopter and airplane by sound, lots of pretend play, great eye contact, pointed and followed a point, clapped. Language was always clear and easy to understand. Around 2 1/2 he began to only count to 5, then he would only say 5, then that was gone. Then we noticed other words disappear, suddenly he would only eat finger foods, he was no longer coloring. Then his behavior started changing, the first thing we noticed was that he began pacing frantically, and we couldn't bring him out of it.

Along the way he has continued to have cognitive regressions, and his behavior deteriorates every time. We begin to see autistic behaviors that were not there before, e.g. recently he began flapping his hands in front of his face.

When a regression stops he does begin to regain some of the lost skills, but very little, and the new behaviors show up but never disappear.

He has very little language left, but when he does talk, it is almost always a one word response to a question. At other times he will label something he wants us to look at.

We have a ltr from his first teacher that clearly details a regression, and the shock at what was happening. He goes thru a regression about every 5-6 months.

Today he is 8 yrs old and very low functioning. Yet he is still very affectionate, loves attention, laughs with us, laughs at his favorite scenes in movies, is full of mischief, and on good days he still has good eye contact.

I know lots of children with asd have regressions, but I've yet to hear of another child that has lost skills like my son.

Hi smith22, and welcome to IAN.

I am so sorry to hear about your son's difficult journey. It must be incredibly disheartening to experience this loss of skills multiple times.

I would be interested to hear from other parents who have experienced something similar - not just the "good days and bad days" or "good weeks and bad weeks" that seem to characterize many children with ASD, but a sense that regression is actually occurring multiple times.

[b]

I just recently in the last week found out my son had autism. I was very concerned before he was even diagnosed because he would be able to count to 20 one week and the next only to 5 and it would take a week to get it back. Also with toileting he goes a week with no accidents then a week where he'll have 3 a day. He is 7 years old and I just feel he isn't getting everything from school I know its a long process but it's killing me that I cant help him i feel so helpless i've been researching non stop since we got the diagnoses but i just feel like im spinning I actually had to go back into the doctors office and ask if he had it or if we were checking if he did. He also is being checked for fragile x. AHHH I just feel a little dizzy if anyone could help or just compare notes i'd be grateful