Anyone Out There with a "Tentative" Diagnosis of Autism Spectrum Disorder?

We encountered the same situation when my son was also 2 1/2. We took the diagnosis because we also realized that he needed more services than what he was currently getting. At the time the only services he was receiving was OT in our house. After the PDD diagnosis he started receiving Speech and ABA therapy. Both made a world of difference! It was tought taking the diagnosis without being completly convinced that it was correct. My best sugestion would be to have your son evaluated by a pediatric neurologist. Truly they are the only one's who can make a true diagnosis. My son is now 7 and more developmentally delayed than Autisitic - but those early extra therapies were a Godsend, because regardless of what he was dianosed with - he needed the extra help.

You did nothing wrong! Hang in there- you are doing everything right! Love your children and have a Happy Mother's Day!

D.,
I work in EI and have worked with a lot of kids on the spectrum - I know of some excellent, excellent books and resources. Email me off group if you want more info. As a short answer, you are definitely better off getting the services now and hoping that he loses the diagnosis. The earlier the better! If you have a child with crohn's and one with possibly autism, you may want to consider a big diet change - both diagnoses have been known to improve on a gluten and casein free diet, and/or yeast elimination diets.
M.

The mommy guilt is going to be there, its just a natural thing to feel like that, you have not done anything wrong.

Autism!!!! it is very young for a 2 1/2yr old to be dx'd with autism but, i would take the reccomendation and have them start the services. It is crucial to have early intervention for autism. Well i have been there and done that my son was dx'd at age 3 1/2 so we missed out on birth to 3 but that early program helped very much, he only has 1/2yr left and they would do extensive testing on him and then you would find out for sure what is going on and there reccomendations for the school system when he is passed through.
I can't say enough about this,i know how hard this is and how overwhelmed you feel but this is your kid and you have to do whats best for him or her at this point
try to have a nice mothers day today
and good luck to you
L.

About coping with "mommy guilt": You are not guilty of anything. It's called genetics. You are not able to determine how your children turn out. You ARE able to nurture and love them. You ARE able to take care of their needs. Are you guilty for the color of their hair? No. Are you guilty for their cute, adorable faces? No. Are you guilty that you have "3 wonderful children." Why yes, and proud of it!

Oh, dear, you haven't done anything wrong! Parenting mean a lot of worry and adjustment and dealing with thing we never anticipated.

Although, of course, I can't tell you what's going on with *your* children specifically, I did want to suggest a book. I just finished reading it at the recommendation of a good friend who was recently diagnosed with Crohn's disease. She recommended it to me because my family has Celiac disease (another gut disorder), and this book covered both disorders along with autism spectrum disorders. So, you might find it useful for both children. It's called Breaking the Vicious Cycle by Elaine Gottschall BA.M.Sc. and it addresses a variety of disorders (the three I've mentioned and more) that have, in some patients, been successfully reversed through dietary therapy.

It's a really easy read--I read it in two days--and it includes how-tos, recipes, etc. As the medical establishment begins to recognize the profound relationship between the gut, the immune system, and the brain, more people are discovering that they can help themselves by healing their gut.

It's probably worth investigating at least. In the mean time, don't beat yourself up. We're all just doing the best we can, and you know that they're lucky to have a mom like you who is so involved and loving. Happy Mother's Day!

i'm not sure what the 4 key areas you are referring to but often sensory issues play a role in autism. i have a daughter who is 2 1/2 and in EI. about 6 mos ago they suggested a developmental screening for autism/pdd. we held off because she had only a few quirks and we were already getting services (and i am leary about the over-diagnosing going on these days). now, 6 mos later, the assessment team does not see the need for the eval. that said, she does have sensory issues. i am reading 'the out of sync child' which addresses sensory processing disorders. it is VERY eye opening and such a relief to learn some techniques in helping her cope with being over-stimulated! also, it spells out how it is related to other developmental issues.

My middle son (now 9) had a diagnosis of autism at 2.5. He is fine now, a little type A but fine. I would seek out advice of others just to get a handle on whether or not it is a serious problem. EI is in the business of placing kids in categories and treating them, like the old saying goes, if you have a hammer everything looks like a nail. I'd ask your pediatrician for a referral to an expert at children's.
Also what were the 4 key areas. Boys have differeny delays than girls. So if the areas were speech related I wouldn't worry as much. Does he make eye contact, is he cuddly, if his speech isn't great is he good at communicating.
Good luck. I know how hard this can be. Even all these years later we still worry about our #2. But I guess thats Motherhood

I never felt so alone as when my son was diagnosed and it became my life (although there was no question that he was on the spectrum at age two). The best thing you can do is talk to people and not bear the stress yourself. I don't know if you can have your husband help more with tending to the other children's needs or developing a rotating schedule. The early diagnosis is key. At age 2, my son did not speak, did not touch anyone, and lived his own world of spinning objects within two inches of his eyes. He is now 4.5 yo and will be entering kindergarten in the fall with no special services. He still caries the diagnosis, but he likely will test off the spectrum in the near future. You can email me personally if you would like any recommendations. I can't lie, the next year will be tough, but hang in there. It gets better. Remember to take care of yourself, remember the other members of your family, and don't let this consume you. You can't do everything yourself! Ask for help. When you see the progress of early intervention, your guilt (although totally unwarranted) will be replaced with the pride of success.

My questions: Has your son displayed any milestone delays?
If not, I seriously doubt any definitive diagnosis of autism. My son was diagnosed with PDD (pervasive developm. disorder and later with aspergers (autistic spectrum). There was alot more to it than 4 key questions. I would recommend childrens hospital for neuro eval before you stress. I explain to my other children that just like diabetes,or other, your brother needs special doctors and support. I have them appreciate their health and help out.

Hi! I was in a similar situation to you last summer. My son (turns 3 at the end of the month) received a diagnosis from a developmental pediatrician in August that put him on the spectrum with PDD-NOS. He was a preemie (born at 27 weeks), and many of the characteristics they used to give him a diagnosis were just the result of him coming into the world way too soon. The day before the diagnosis, he had his early intervention eval, and they saw nothing that would have given them they idea he belonged on the spectrum. That being said, the doc felt he needed to start services immediately, and she said that she may reverse her diagnosis in 6 months (we haven't been back, though because I really did not like her). The whole thing freaked me out, but I went along with the services, and they have been nothing but wonderful and helpful. I would take any services they give you - it will do nothing but help your son. My son is doing wonderfully and when he turns 3 at the end of the month the services end. I firmly believe he was misdiagnosed, and I am working on getting him a second opinion at some point in time. I am glad he was able to receive both EI services and autism related services - it will only help him in the long run. I truly believe his delays (speech and motor) were due to his being born way too soon.
As for doing something wrong - you didn't! I felt the same way when I first got the diagnosis, and then I cried for the next 24 hours about what did I do wrong. It took me a while to realize it, but I know there was nothing I could have done about it. It was just a shock to me. The doc even reassured me that it was nothing that I did that would have caused this. I hope this helps, and please know that I have truly been there and understand what you are going through.

Hello,
I'm a teacher and it is true that in order to get ANY services at all..evne minor help, they need a diagnosis. I woudln't beging worrying too much. Also, if your son is anywhere on the spectrum, and they cought it this early, that's a good thing!!!!!!

I would suggest you take your child to a metabolic doctor for testing to rule out a mitochondrial disorder (which is more and more often the underlying problem). If your other child has Crohn's there might be a genetic history in your family with autoimmune disorders. Most autoimmune disorders are mitochondrial disorders.

G.

It is wonderful that you are possibly going to be getting services from EI. Keep in mind that in most states, EI ends at the age of three years and the public school system takes over. Getting involved with EI at this point is a good thing as they will advocate for your son as he enters public school to get him the services that he needs. It won't be solely up to you.

Most towns have what they call a PAC. I live in Peabody, and I belong to the Peabody Parents of Children with Special Needs. This is a group that meets monthly. We act as liaisons between the parents and the special education department. No one knows your child and his needs better than you. Our speakers present topics that, I believe, enable the parents to become more informed about the special education process, about basic rights, about services available, about how to deal with specific issues. I believe our group enables parents to become their child's best advocate to insure the child receives what they need.

Above and beyond that, I have met many, many friends through this group. They are always there to consult with. We talk about sibling issues, about behavior issues, about everything. Our children's diagnoses vary, but we gain information and support from each other.

You cannot blame yourself for anything. I think the best way to deal with the "mommy guilt" is to become the best advocate you can for your child. First, you must find out the extent of your child's disability.

D., You know you have done nothing "wrong". In fact, you are doing everything right. By going through EI, and getting services, you will only help your son get on the right track. If it turns out he is not on the spectrum, there is no harm done. You have your hands full trying to deal with several issues at once and it may be quite overwhelming at times, but try to spend some alone time with your middle one so she doesn't come to resent the diseases or her siblings. We wish you all the best,
M.