[vloky]

I am really on the fence. My 26 month old has very few words is tactile sensitive and stims a lot and shows a lot of signs of being "on the spectrum" I am not sure if I want him tested and diagnosed and labeled really. Yet, if being diagnosed could help make things easier on him and myself it might be worth it. I am just really undecided.

So, what made you decide to get your child tested/diagnosed?

 

[Kristine233]

I was covered in bruises and couldn't trust him around other children. Being young that just led to a DX of SPD, the ASD DX didn't come until he was in school.

 

[earthmama369]

DS (2) has a speech delay and we decided to pursue testing and speech therapy because he was unhappy with the situation and we felt earlier therapy would probably help more than delaying, in his case. If he was hunky dory with his speech, we would have debated a lot more about starting the evaluation process at his age.

With a spectrum disorder, I do tend to think that earlier diagnosis can be helpful in opening up resources and support for the whole family. I'm not sure how earlier therapies affect overall outcome, but in terms of general stress, I think it helps.

 

[Dandy]

He had hardly any words compared children much younger than himself. So we had his speech evaluated. At the urging of his Service Coordinator, we also had an appointment with a pediatric development specialist. I wasn't expecting any diagnosis, but he ended up with an Asperger's diagnosis.

I guess everyone saw it but us :/

 

[sbgrace]

Getting a diagnosis was really helpful to me emotionally and relationally. I think this is particular to my personality but I was constantly watching him and wondering if what he was doing was "spectrum" or not. When I knew I no longer tried to figure it out. Instead I could just be with him.

It also helped me pick therapies for him. In our case Insurance has to pay for therapy with an autism diagnosis and doesn't pay for it without. So that was a huge factor in getting a formal diagnosis. So I needed to know (unofficially) for myself. I needed to have it officially to be able to afford things to help him.

 

[sunflowers]

DD had very few words and exhibited a lot of repetitive behaviors. She also became obsessive over letters. By the age of 2yo she knew every letter in the alphabet, by 2.5 she knew the lower case letters, too. Before 3, she could tell you what sound each of those letters made. She counted things using letters... you get the idea.

I agreed to have her evaled b/c I was a bit afraid she wouldn't qualify for services past 3yo (she was a preemie and needed the services). The dx allowed her to get ST privately, too. I'm thinking of getting her some hippotherapy to help with her low tone and insurance will pay for hippotherapy with a dx of autism but would not if it was for a developmental delay.

FWIW, she is in our public school preschool now and she LOVES it! She's doing really well and gets to interact with a group of kids her age under guidance of teachers. It's nice b'c the teachers are able to direct the play to an extent in order to facilitate the goals of the kids. Some need help with cooperative play while others need help with imaginative. The teachers are very adept at facilitating this sort of interaction!

 

[williamsmommy2002]

We knew from before he was 2, but at 3 when he only met one of his milestones, the ped suggested he be evaluated through the school system for services. When they came back saying he wasn't autistic, it made the ped mad. She sent us for a formal diagnosis.

With ds2 there were little signs I had been seeing for a few months. When he went for his 3 year checkup he freaked out and the ped thought it would be smart to rule out an asd since his brother was autistic. He was diagnosed during his eval about a year after ds1 was diagnosed by the same doctor.

 

[Welovetaterbug]

My son (who is 4 now and was officially diagnosed with Autism in April of this year) started out like every other child..crawling,walking,jibbering,doing everything on time,he was always a little "high strung" and liked things a certain way,refused most foods and would eat 5 things (mostly dairy,yogurt and cheese) but I just figured he was one of those picky kids...it was at around 18 months, his word formation began changing..he started regressing in his vocabulary,in which resulted in more and more frustration that turned violent (head banging,hitting,kicking), soon he began to show signs of digestive trouble (severe constipation for a week, then would have diarhea for days),began keeping constant ear infections,& he seemed to be getting intolerant of simple things like lights,music,groups of people,and textures like grass and fabrics of clothes. At his 2 year appointment, I was desperate for some answers,some support,some direction of what was going on,but sadly, his doctor (who i gladly kicked to the curb) said he needed time outs and his speech/language issues were "typical childhood stuttering"...after doing hours and hours of research, I knew something else was going on and found a new doctor who recommended us to all of the right people, we saw nutrionists,gasterologist,ear nose and throat docs,pyschologist, and sppech and language therapists. After months and months of testing (and waiting to get in to see these people!) we finally got the confirmation of what I had known for 2 years, he is Autistic. Reguardless of why you may think your child is on the spectrum, let me encourage you to do all you can to get early intervention for whatever the problem may be. Good luck and if you ever neev advice or would like to just talk, feel free to contact me anytime!!

 

[Lollybrat]

I had several reasons for getting DS evaluated:

Something was clearly amiss in DS's development. At age 2 he was not talking. But he could use his letter blocks to spell out words like "motorcycle", "emergency," and "helicopter" and we realized that he could sight read. Doing research online, I learned about Hyperlexia and it's connection to autism.

I had contacted Early Intervention due to DS's lack of speech. We were shocked when they found that he also had motor delays and social delays. The therapists strongly recommended a full eval at the children's hospital developmental pediatrics clinic. A medical diagnosis would make his eligable for more services.

I needed to know what was wrong with my child. I felt that identifying the problem would help us determine the right therapies and treatments.

Additionally, some of my in-laws insisted that there was NOTHING wrong with my DS and that all of his delays and issues were due to problems with my parenting. These in-laws were telling my husband this frequently, my husband was starting to believe it, and it was becoming a major issue between us. I knew that this wasn't the case, but for my own sanity and for the sake of my marriage, I needed to be able to tell my in-laws, "The doctors at Children's Hosptial said that there is nothing wrong with my parenting and DS has X diagnosis."

The diagnostic process took almost 6 months, so by the time we got the offical diagnosis of Autism (a week after DS turned 3), it was what I expected. And at that point I just felt relief to finally have an answer. The diagnosis also ended my husband's denial and he became very supportive of the interventions and therapies I was setting up. It didn't completely silence the in-laws, but since my husband and I were on board together, that wasn't as much of a problem.

 

[Steve's Wife]

It's pretty obvious something isn't right cognitively w/ my 6 month old, as she is nore like a 3 month old in most respects.

 

[FitMama]

My appointment (to get assessment results) is today at the Regional Center. I don't know what the psych will say for sure, but she has heavily hinted that he is high functioning aut and won't qualify for services through the Regional Center, but through the public schools only.

DS is 5 1/2 and we always suspected something was atypical. As a public school teacher, I should have been more alert about the warning signs. But denial is so powerful! So is faith. So is love. I had such faith that he would "mature", or "outgrow" this alternative path of development.

When he was 4 1/2 I finally contacted our school district to see what was up. They dx'd semantic/pragmatic language delay, and he was placed in a SDC Pre K with embedded APE and OT. His eligibility is SLI. He transitioned in June for fall gen ed Kinder. Yay!

DENIAL ALERT! I assumed that all would be FINE in Kinder (20:1, with just the SLI eligibility...OOPS). Amazing how all the ASD signs were RIGHT in front of me and STILL I believed he would get along just fine.

He did not transition well. He began acting more and more spectrummy. So back to the drawing board. Neuro appointment and an eval by the Regional Center followed. The school is dragging their feet on a psych assessment on their end. I hope to get some comprehensive info today. We have a "mini IEP" next week.

 

[azmomtoone]

......my kid has not been tested yet.....I want him to be primarily for my own sanity I guess (although I'm not SURE that I want him to be KWIM)....but right now....DH, family & friends all think that I'm being a worrywart at best, or a bad parent at worst......
also, if we could get the speech therapy he obviously needs through insurance w/ a dx, then we are denyinig him a very basic right (to be able to speak/communicate) by delaying dx.

 

[DaughterOfKali]

I wanted ds evaluated so that:

1. My insurance would pay for therapies.
2. He'd get more services through school. Having a written, professional diagnosis seems to help with IEP's here.

 

[vloky]

Quote:

Originally Posted by azmomtoone ......my kid has not been tested yet.....I want him to be primarily for my own sanity I guess (although I'm not SURE that I want him to be KWIM)....but right now....DH, family & friends all think that I'm being a worrywart at best, or a bad parent at worst...... also, if we could get the speech therapy he obviously needs through insurance w/ a dx, then we are denyinig him a very basic right (to be able to speak/communicate) by delaying dx.

thats where i am at and the doctor referred him to be seen for evaluation, but only one place takes our insurance and he was 100th on the waiting list as of september. I am thinking of calling the people through medicaid though. Someone told me they have to get me an appointment scheduled. I am sort of scared of not being able to get him the help he needs if I wait to long..

 

[ShadowLark]

When I realized how off his speech was and I saw on an online ASQ test how his other development was off, too, I sought out help. The doc had me go to a Dev Ped just because Brendon is small for his age (they wanted to rule stuff out) and because he wasn't talking yet. Honestly, it was the NP, and I think she was looking for neglect. But I played their game and I got vindicated - and Brendon started getting the help he needs.
He's about to start a Toddler Class and that will help IMMENSELY with getting him into the SN Preschool when he's three. And the sooner he learns alternate strategies (and the sooner WE learn them too) the better off he'll be. This isn't about a label - it's about making sure he has as many options as he can to reach his full potential.
And maybe it's about teaching his peers to be accepting while they're still young enough for it to be a normal thing to have.

 

[mamasaurus]

Quote:

Originally Posted by vloky So, what made you decide to get your child tested/diagnosed?

She was 4 years old and not doing well in preschool. We tried two different preschools and she just didn't "get" how to act there. Ran away from the teacher, fought with other children, big tantrums, hit the teacher. In both cases, they wanted us to take her out.

She was always a challenging kid. We had about 4 people suggest Aspergers to us. So, we went to see a psychologist, and she was diagnosed with Aspergers, and also has an IQ in the 150s.

Having the diagnosis has helped us learn how to deal with her better and not blame ourselves.

And unexpectedly - it also helped immensely in getting her school situation going - we went into the IEP meetings with the doctor's letter and were handed everything on a silver platter.

 

[storychick]

I was desperate for help and knew that no one I knew was going through what we were going through with DS -- that something was different.

I saw how his issues were impacting his functioning, both at school and home, and I really wanted to know how to help him enjoy life more, be able to do the things other kids did.

I wanted a way to explain him to other people, so that when I had to restrain him forcibly in public because he was attempting to hurt me or someone else, I could say "he's got X and that's why he's being this way." rather than people making assumptions about me and my parenting.

Later, we continued to pursue diagnosis (for us it has not been a clear-cut case of it is X and know we know what to do), because his ability to function was still quite impaired and he was struggling in school. He was old enough (7) to be dx'd with things they were reluctant to call him at age 3 when we started. During the process he became suicidal and attempted to cut himself repeatedly and was nearly hospitalized. Since then we have continued to seek therapy for him and ourselves and try to find out why. We're still not there yet but we are getting closer.

For us diagnosis has been nothing but positive -- he has gained rights in school (though we still don't have an IEP

and we have gained support from the school community with his struggles. We have access now to a number of professionals, including a therapist, neuropsychologist, neurologist, and we're working on a psychiatrist. He is on medication that helps him significantly at school and keeps his tics at a comfortable level. It just opened doors for us, though it was a long struggle to get there and will no doubt still be a long road ahead.

 

[christinelin]

Quote:

Originally Posted by sbgrace Getting a diagnosis was really helpful to me emotionally and relationally. I think this is particular to my personality but I was constantly watching him and wondering if what he was doing was "spectrum" or not. When I knew I no longer tried to figure it out. Instead I could just be with him.

This is me, completely. Once I could see DS's delays, I had to know what was going on. There is a huge difference between quirky and a little slow socially and an ASD. The ASD is pervasive and effects things like reading comprehension and ability to do imaginative play. I felt I could best help DS by seeing everything correctly and fully.

Truthfully, if you have a toddler with signs of an ASD, I think the chances are good that your hand will eventually get forced and you will end up with a diagnosis eventually. I have an aquaintance whose son is now 6 1/2 and the school has basically forced her into it. She held it off for years, but at a certain point, it becomes necessary (unless you homeschool longterm).

 

[mamafish9]

Quote:

Originally Posted by vloky I am really on the fence. My 26 month old has very few words is tactile sensitive and stims a lot and shows a lot of signs of being "on the spectrum" I am not sure if I want him tested and diagnosed and labeled really. Yet, if being diagnosed could help make things easier on him and myself it might be worth it. I am just really undecided. So, what made you decide to get your child tested/diagnosed?

We were pretty sure our 21 DS is autistic, but at least here, the EI evaluation was just to qualify him for services. All they did was confirm that he is delayed in his social and speech development (they tested a bunch more as well). They agree he may well be autistic, but at this point, our evaluator said he will get the same services (home visit help around his delays) as he would get with any formal diagnosis, so she just advised that we go slowly and watch him and see how he does. That felt good for us - no rush to "label" him, but resources to access and another set of eyes. That said, we're still very early in the process, and there are plenty of things to dislike about "formal evaluations" that we've already seen - mostly the one size fits all approach to measuring skills, and a really "fake" environment to assess a child's natural play and interactions.