How long did it take to get your child's diagnosis?

[Evie1029]

Hi, I was wondering if there are any parents here with special needs kids and how long it took for you to get your child's diagnosis.  Two weeks ago I began the process of having my 18 month old daughter evaluated for autism and I'm feeling overwhelmed by all the tests/evaluations that she's going to need.  We had our initial appointment with the Autism clinic and last friday we had her hearing test, which didn't go so well as now they're recommending her having her hearing tested while under anesthesia.  The Autism clinic also gave me the impression that it may take longer than normal to get her diagnosis because she's so young.

I just want to get her the help she needs now.  I know there's a chance she may not be on the spectrum at all but I do have a family history of it and the nurse practitioner we saw at the Autism clinic does think could have it.  I so wish getting the diagnosis could be as simple as a blood test.  It's very frustrating knowing we may have to wait several months before we can move onto the next step of getting her help.

[campbridgeWALLNJ]

The younger the diagnosis the better. You will be elligible  for all the services your child will need to eventually have the school or Dr de-classify him. A EARLY diagnosis is not bad. You will get free or reduced speech, OT and PT and free pre school in your district. Eventaully you will have ABA making it possibe for your child to someday talk and socialize and maybe mainstreamed one day if you as parents follow through.
The State NJ is declassifying kids left and right now because of our amazing EI and preschool programs. GET A NEURO APPT ASAP!!!!! GET on the wait list at any hospital. NYU, CHOP , Childrens specialized, Hackensack.

[specialmom]

Hi there. Oh, I know it is tough as we do find out that our warning bells indeed were on target with our child.  But I want you to know that they do amazing things with kids.  AMAZING.  My own son had many many issues as a toddler and functions pretty well now after intervention.  You'll be amazed at the way they can help your daughter!  Hang in there and have hope dear.  I promise you, you'll see great improvement.  Peace.

[Evie1029]

So we had a speech evaluation for my daughter at our local clinic yesterday.  She scored pretty low for both receptive and expressive language.  They based her score off of the 'bell curve' where -1 to +1 is within the normal range.  She got a -3 for both scores.  I've been really trying to stay positive but I gotta say that her scores depressed me a bit.  I just finished a great book called "Parenting Girls on the Autism Spectrum" by Eileen Riley-Hall".  She's a special ed teacher and also a parent of 2 teenage girls that are on the spectrum.  Her oldest has Asperger's and her younger is more severely affected by autism, in a way where she most likely will have to be cared for for the rest of her life.  She really has a positive outlook on raising children with autism but as I was reading about her younger  daughter's symptoms at age two I noticed an awfullot of similarities between her and my daughter.  I suppose I've been in denial about how bad my daughter could be affected.  I've been picturing that with therapy Evelyn (my daughter) could be functioning normally (hopefully) by grade school.  I know it's impossible to tell the future but it's really depressing to think she may never marry and need assisted living her whole life.  Oh well, I know I shouldn't dwell on it.

Evelyn's going to start speech and occupational therapy next week and will also be enrolled in the developmental preschool that the clinic runs.  I got a book on sign language and have begun using some basic signs with her.  I don't think she gets it yet but it's only been a little less than a week since I started.  Overall though, she seems happier since we've been playing with her more and letting her get more physical activity.  She doesn't have near as many meltdowns now so that's a plus!  

[specialmom]

Oh, I am really so very happy for you.  This sounds just great for her and I think you will be so amazed and delighted with her progress.  Peace in your heart knowing you are doing EVERYTHING possible for your daughter!!  good luck and keep us updated.

[Evie1029]

So we just got back from the assessment with the OT and teacher.  The speech therapist  wasn't able to be there today but we'll be scheduling an evaluation with her soon.  These people were amazing!!  They were sooo good with my daughter.  She started out tired and cranky and by the end she was laughing and interacting with them.  She let them touch her when playing with her too which she's never done with anyone but my husband and I.  I wish I could get them to babysit, lol!

So she scored similar to her previous assessment but did a little better with the cognitive testing.  The OT recommended further evaluating her sensory processing.  She said she noticed that my daughter really began to engage and interact with her when she was stimulated with noises/physical activities.  I would have never thought that possible!  So we're going to start working with her at home by trying to get her to imitate and interact with us through songs, games, and fun activities.  She's also going to start at the developmental preschool at the clinic for two afternoons a week.  I hope she likes it, she's never really shown any interest in other kids but if she can surprise me like she did at this assessment I'm sure she can surprise me there.  They couldn't really tell me when her therapy would begin but it'd probably be in the next week or two.  I hope her assigned therapists are as good as the ones today!  I'm just overall very pleased with this clinic and it's staff so far.  

[specialmom]

That sounds great.  I totally agree by the way that early intervention/therapy can make all the difference in the world.  You will be amazed at the progress you see!  Wishing you all the best and keep us updated!

[Evie1029]

Yes, it does feel good to have started her in the program.  It was very encouraging to hear the assessment nurse talk about how quickly therapy can begin to make a difference.  Thank you both again for your input, I really appreciate it.  I don't know anyone who's gone through this other than my own mom.  My little brother was diagnosed as mildly retarded with autistic tendencies as a child but he's 25 now and I know the early intervention programs have changed a lot since then.  

Specialmom, your younger son sounds like such a sweet, caring boy.  I think growing up with my brother made me a more understanding and empathetic person and I'm sure you're right that your son will be one too.

Anyway, I'll keep you guys updated.  Thanks again for your support.

[skepticalpeach]

I should probably also add that when children have developmental problems such as ADD, autism etc it often seems like they can't hear. They are off in their own world and not paying attention. It's important to rule out hearing loss, but it's not always the reason they aren't listening.

I think that having a sibling could really benefit your child. Although it will probably be difficult for you for a while. Hopefully the next child will encourage speech and development in your oldest.

[skepticalpeach]

That is awesome that you got the ball rolling! Sometimes it is really difficult to get professionals to take our concerns seriously. My daughter also has trouble with her speech, hates having her head touched, and would not sit still for a hearing test. OT has really helped with a lot of this. We chose to wait on the ABR because her baby hearing tests were fine. In MN hearing tests are mandatory for new borns. The other ladies have some good advice too! Good luck!

[specialmom]

Hi there.  Well, it sounds like you are on the right track.  I know how very hard it is when you are going through this process----  but remember, this is how you get the help she needs.  I want to tell you that it sounds like she is doing good with her motor skills, this is great.  Celebrate the positives.  My son was also behind in social skills---they really can do many things to help with this.  We've done social skills training, worked on it at home, worked on it with our occupational therapist.  Amazing improvement has been made!  We also made a special effort to socialize with him.

As far as a second child, well-----  you can tell her about it and have her pick out a little present to give baby and then have a present when you bring baby home to give her from the baby.  

In reality, life with a child with a developmental issue is a little different.  My younger child has sat through hours and hours and hours of therapy appointments for my older son, has done all the ot activities at home that I do with my older son (we just include him), has had my older son's needs dominate the house at times, has to be patient as we work on things with his brother.  It's just his reality.  I had him out of the house as a baby working on things with my older boy.  It was hard to go to the park to socialize with my younger son but it was what my older son needed-----  so he went.  My boys are 16 months apart------  many things were hard to manage but if it helped my older boy, we made it work.

Ironically, my second son's best friend most likely has aspergers.  He's a great compliment to this little boy and they are such wonderful friends to one another.  My second son has the ability to be patient, to be flexible, to see beyond obvious issues to the heart of a child.  He'll probably grow into a very empathetic person because of the way he has been a trooper to his older brother.  That has been his reality.  He gets plenty of attention, believe me, but lots of what we did in his early years revolved around his older brother's needs.

I do wish you luck and let us know how things continue to progress.  peace

[Evie1029]

So we had an at home evaluation with a clinic that does the birth to 3 program.  My daughter's results were 10 months for cognitive and communication skills, 7 months for social skills, 14 months for self help/adaptive skills, and 20 months for physical/motor skills.  We're going to meet with an OT, speech therapist, and a teacher next week for another evaluation and to come up with a therapy plan.  We also have another appt at the autism clinic on monday so I'm going to ask more about the benefits of doing the hearing test under anesthesia.  My husband is not keen on the idea so hopefully the information the autism clinic nurse gives us will help sway him.  

Now we have to come up with goals we want my daughter to achieve through therapy.  I definitely want to get started on increasing her communication and social skills.  She really needs help with her nonverbal communication.  She's never responded to her name, doesn't know how to point or follow a point, and isn't able to communicate her needs other than by having a meltdown.  I'm also pregnant, the baby is due in August.  I'm pretty worried about how that's going to affect my daughter.  When I first became pregnant I just assumed she'd continue developing like normal and i'd eventually be able to talk to her about the baby and help prepare her for the change before the birth.  Right now I don't think she understands anything we say.  

What would you guys recommend we work on in regards to helping her prepare for the baby's arrival?  I've been doing my homework reading up on different therapies but I'd really appreciate any advice or insight.  This baby boy will be our 2nd child and I just don't know what to expect.

[Sandman2]

   I might add that the hearing test is important.  They have recently found some links between hearing and autism.

[Evie1029]

Thank you all for your replies.  We're lucky to live so close to a good clinic and they have seemed to take us by the hand as far as telling us the next steps to take.  On Friday we're having an at home evaluation done by one of our states birth to 3 programs.  That makes me feel better to know that that may get the ball rolling on which therapies need to be started.

Thanks Specialmom, I'll get started on reading up on those subjects.  I have looked into symptoms of sensory integration disorder as I understand that that and autism often go hand in hand.  She does hate having her hair brushed and doesn't like to be touched/cuddled unless she's the one to initiate it.  And who knows, more of those symptoms may start to pop up in the future since she's so young.  

[skepticalpeach]

He is a bit young to get a diagnosis right away, but you can start therapy. Just ask for referrals and get started! My daughter didn't get her a diagnosis of autism until she was 5, but has been in therapy for years. The only tests we did with the developmental pediatrician were the bubble evals. I don't remember exactly they are called. The school district and all of our therapists think it's autism, so he just went with that. Wouldn't it be nice if it was easy to diagnose!? But it's not.

[specialmom]

Hi, My son was diagnosed pretty much right after his evaluation.  I will tell you that we went through an initial evaluation and it was inconclusive and then about a year later, we repeated the evaluation and it was clear.  

My son does not have autism but sensory integration disorder.  We immediatly began occupational therapy and saw improvement in some things right away.  

My suggestion would be to really start reading up on autism, speech, social skills for children with developmental delays and sensory integration disorder.  We used pieces of things I learned from every area such as above.  

With intervention, my son is doing terrific.  He's now 8 and has friends, functions well, and is pretty happy.  I remember how anxious I was before the evaluations and during.  But remember, it is done to figure out what the next step is for providing HELP.  So, being diagnosed is a good thing . . .  it is how you address the specific needs of a child.  Wishing you luck.  Keep in touch

[tiredbuthappy]

My understanding is that at this age they may not diagnose as "autistic" but rather the individual issues that come along with it such as speech delay, OT delays, communication impaired, sensory integration, PT delays, etc. Of course, in many cases a diagnosis of being on the spectrum does occur, but in cases where it is not definitive, these other diagnosis would still get your child some of the therapies she needs. It is wonderful that you have a clinic to guide you through the process. Your daughter is also very lucky to have a parent in tune to the fact that something may be wrong. Hearing is a great place to start, as that can cause a lot of the symptoms that we see as autistic. Early intervention can do wonders for a child.