DS1 showing signs of autism and pregnant with second

[Anonymous]

Our 20 month old DS is showing some signs of autism. We had him evaluated by the Arlington PIE program and he is delayed a few months in 2 areas. I am praying that it may be related to his environment as he is at home with a nanny with poor english. We have made appts for 2 different developmental pediatrician but are looking a long wait. Anyway, yesterday i got a positive pregnancy test result. If i wasn't so concerned about DS1 i would be thrilled. Now i am worried about him and how i will care of him and a newborn baby and fearful that i may have 2 special needs children. Any words of advice? Is there any benefit in having DS1 not diagnosed? If we treat the symptoms regardless what is the point? Also dealing with my family (esp MIL) who absolutely believes he is not autistic and who blame his delays on me not being home all the time. So much to deal with.

[Anonymous]

Congrats on your pregnancy! This is a tough time for you, I can completely understand having mixed emotions about the pregnancy. There's no reason to think that your second child will be anything like your first.

Whatever happens -- just remember that most people who have kids with special needs don't automatically know how to handle it -- they grow into the job, because they have no choice. Your son is your son, and will always be your son, whether he turns out to have a diagnosis of autism, developmental delay, speech delay, specific language disorder -- or nothing at all. But he'll always be the same son he was, before he had any diagnosis.

"Delayed by a few months" in two areas doesn't doesn't all that bad -- may I ask what are the 2 areas?

Did the Arlington PIE people say he had signs of autism, or is that your interpretation?

[Anonymous]

It certainly does sound like you have a lot on your plate. I think the thing to do is take it step by step. I would agree with the PP about wondering where the diagnosis of autism came from -- you or PIE? 2 month delays are not definitive of anything, especially autism, given that children's development fluctuates with each individual. A big question also is whether he has lost previously-acquired skills (i.e. was he speaking words and now isn't; walking but has stopped?)

As to whether or not your child is diagnosed per se ... I think the ? is somewhat moot and I believe most dr's would be reluctant to diagnosis autism unless there are significant global delays (in multiple areas of development). But you're right -- you would just treat your child's symptoms (delayed communication, motor skills, etc) while recognizing that he is the same child he was prior to the diagnosis. The only benefit with diagnosis is that he may be entitled to additional county-provided services and/or your insurance may give you less trouble when reimbursing for services provided if he does receive a diagnosis.

Please try to remember that this is a process...you and he will both change in the future. And not AT ALL to sound dismissive of your concerns, but I'm guessing pregnancy hormones, working full-time, caring for a 20 month old, coupled with 1st trimester fatigue make all this even harder to deal with -- it's a lot for anyone to handle at any given time.

Know that there are lots of resources out there and people to help him and your family in general.

Best of luck.

[Anonymous]

I was in the exact same boat, my son was 13 months old when I got pregnant with my daughter. At the same time we were told that our son showed signs of autism, which did not come as a huge surprise to me. Throughout my pregnancy we had him evaluated further and he went through a 6 month regression period and became non-verbal (loss of the few words he had, no more babbling) it was frightening and depressing and my pregnancy took a turn for the worse. He resumed talking again at 25 months with lots of help from a therapist and one-on-one attention.

He was diagnosed with Autism at the age of 2, shortly after my daughter was born. The odd thing is that once I knew my daughter was a girl, I had a strong feeling that she would be fine, which she was, she shows no signs of autism.

Developmental delays by themselves can have so many causes. Did they come up recently or were they there for a while? Any behavioral abnormalities? A diagnosis is helpful to obtain services, but as PP said, unless your child shows definite signs, you likely won't have one for a while.

I am not gonna lie: Had I known my son was on the spectrum before I got pregnant, I probably would have never had a 2nd child. But my daughter is the sweetest little girl and we are so grateful for having her. She showed us what it was like to not have to struggle with every single milestone so much. It made us appreciate my son's willingess to fight even more and she helps him, which is wonderful.

Hang in there! It's not the end of the world if he turns out to be autistic, I am sure you will make it through it and find your own way of coping with it.

[Anonymous]

OP Here, Thank you for the replies. Arlington PIE was very careful not to diagnosis our son and recommended we see a developmental pediatrician. He really has inconsistent symptoms. He was assessed as being delayed in receptive and expressive speech. He also has poor attention. He is slowly learning news words, but no longer uses Mama and Dada. He doesn’t ask for things such as milk or food and he frequently will not respond to his name (his hearing is fine). When we go to the park he loves to wander and is obsessed with doors. He doesn’t seem to do any pretend play. He also does not point or wave good bye. He does loves to play peek-a-boo, is very affectionate. He also loves to play chase and wrestle with his 3 year old brother (adopted son). He imitates pretty well and plays appropriately with his toys. THank you again for your responses.

[Anonymous]

How long is the wait for the developmental ped?

Will Arlington help you get some speech therapy started right away? I think that would be a good idea if not, even before you can meet with a ped for a diagnosis.

[Anonymous]

To the original poster,

My son was diagnosed as expressive speech delayed at 20 months as well by the PIE program. The waiting list for the speech services was very long, so I ended up going through my insurance to pay for it. PIE is great for the diagnosis, but I really encourage you to start the speech therapy as soon as you can through your own insurance. You can always switch to PIE when it becomes available.

After 2 months of speech therapy my son was back on track.

[Anonymous]

dear OP:

your DS sounds like my wonderful 27 month old DS. at his 2 yr appoint. I raised my concerns to the pediatrician (stopped repeating words after me and stopped imitating animals sounds). since we thought he had a regression in speech, he advised me to see a speech specialist. the therapist recommended an evaluation for autism, she noticed poor eye contact with her and that he lines up his toys. we got an appointment at childrens in rockville and he was evaluated. he showed 3 major signs of autism, does not respond to his name, does not point, does not waive good bye. he does initiate play, loves peek a boo and hide and seek. he's been in speech therapy for 2 months and he is improving, not by talking more, but he does let us know what he wants, he used to use signs before, he stopped and now he is back. because my DH and I feel that there is room for other things to consider, we requested a second opinion and we have an appointment in March at Hopkins, we are not in denial, but there is so much out there. somehow I feel he could be PPD, that's also within the spectrum, I just do not know what else to do. we are in the waiting list for services for the county and meanwhile we are about to start ABA therapy privately. OT is also helping, and is covered by insurance, ABA is not, so we are hoping that he does ok until the Fall. then he should be able to start school with the county.

follow your gut feeling, call childrens, hopkins, georgetown, ask to be placed on a waiting list to get an appointment, the faster that you learn what's going on the better. I was very sad at first, just kept thinking about his future, but know I feel optimistic, kids with special needs are fighters and we have to fight with them.

hugs to you all.

[Anonymous]

OP, don't worry so much about your pregnancy. The chances of BOTH kids being special needs is rare. I know plenty of families where only one child has special needs.

As for getting a dx. I did not get a dx for DS. Two friends of ours, both physicians, advised us not to. They said instead, quietly and discreetly, get DS into extensive therapy quickly. They said the stigma of getting a dx would not be good for DS. They also said schools can somehow get access to some med information. Once that dx gets into the school system records, it can be a matter of public record as schools are public institutions. Teachers and even pediatricians and other child specialists absolutely do stimatize children with issues - according to our friends.

So we didn't get DS dx, and instead put him in therapy and also did tons of home therapy. However, it has cost us an arm and a leg. We almost went broke over paying out of pocket for his therapies (insurance would have required a dx). Now, we do not take him to therapy as we have learned how to do therapy ourselves at home and have become quite good at it.

DS, btw, is not autistic. He has a regulatory disorder (sensory processing issues and motor planning issues). Is it possible your son is showing signs of autism but is actually not autistic like DS? Perhaps he only has SPD or another regulatory issue.

The best person to go to for a true dx IMHO is Dr. Stanley Greenspan. The man is a child psychiatrist genius. He can, in minutes, tell the difference between a child who has a regulatory disorder and one who has autism. Yet I can tell you that big autism clinics can not. Dr. Greenspan charges alot for his initial appt but less for followups. His advice has been profound for our child. Dr. Greenspan also helps you to feel that you are not in a crisis - there is absolutely alot that can be done to help children with special needs. He is so positive and such a huge advocate for children. His office is in Bethesda. You can google him. If you feel his fee is too high, get his books (he's written several) instead. If your child has a regulatory disorder you want to read 'The challenging child.' If your child has autism, read some of his other books on autism. Good luck to you. Congratulations on the coming baby and don't worry - the chances of both kids being special needs is rare.