If it isn't Autism what else do I need to look for?

[Olivia_Sparkles]

Hey guys, I have been speaking a lot today with my daughter's teacher. A little information, my daughter hasn't been tested, each time I have had her on the waiting list, the day before her appointment, the insurance would drop her. I found a place that I can afford to pay out of pocket, it's still a pretty penny when you're barely making it as it is.

Now here is what is going on, as I have been speaking with my daughter's teacher, she asked me about doctor testing and I told her exactly what I said here, she was asking because there is a special need summer camp that she qualifies for other than not having a doctor signature and her teacher really believes she would benefit from it. I'm a little worried about sending her away from me for a week. However, as we were talking I didn't say anything like that, I am just in my own thought process right now. I brought up that "I've suspected autism since she was 2" her teacher said "I don't think she is autistic, I know something is defiantly going on there, but I do not think it is autism" She is the 3rd special need's teacher who has said this about her. If it isn't autism, what else could it be?

I will lay out how she is.

1. She has to have her schedule set or she isn't happy and neither is anyone else. If we leave the house, she needs to know a day in advance and I have to keep pumping her up to get her ready.

2. She doesn't fully speak, I mean she can say words and starting to put sentences together more now and she's 8. Most of the time I'm the only one who can make out what she is even saying.

3. She is 8 year's old and refuses to poop in the potty, we've tried everything I can think of.

4. When she is stuck on something she will repeat it and won't quit saying it, sometimes a month later she is still saying it until something else triggers her.

5. She is obsessed with 1 item and 1 item only, if that toy has to be washed she will pitch a fit until she has it back in her arms. She can also watch the same show over and over.

6. This one kinda goes back to #1, her sleep, 6:30 pm every night she needs her sleep. I know some kids on the rim have a hard time sleeping but her, she needs a full 12 hours of sleep or no one is getting any rest.

7. She's a mastermind, an engineer if you will. I posted the story in here when her doorknob fell off while she was closed in her room, she popped off a Barbie doll head and used it like a doorknob to get herself out.

These are the main things, I know there are other things but these are the main things. I KNOW you guys can't diagnose my child, I'm not asking for that, I'm asking if it isn't Autism, what are other things I can look into to also get her tested for? I'm still having her tested though. I also wanted to know that without any diagnose she does still have IEP at school.

If you made it through all this, I do appreciate it.

[TheRoyalBee]

It is great that you are getting your daughter tested at school. You can get both a school evaluation and talk to her pediatrician about getting a  referral from a developmental pediatrician or neurologist.

[specialmom]

Totally agree.  I'm a proactive parent too and any help in getting our kids the tools they need for success, I'm ALL for!  Do you have a special child too?

[PHYSC]

I'm adult dual diagnosed, man it took the uk system until I flopped all exams in fact until 11yrs after to actually acknowledge me as dypraxic and autism spectrum disorder well it's classed as aspergers syndrome mild, hmm I would honestly say yeah to a point all is fine but get me in a sleep regime it's going backward fast get up 9pm one day then sleep like a coma till 6pm it varies, but reently I've found my self awaking no lie 10pm, I did know in school in primary as a kid I couldn't understand maths, no it doesn't make you thick silly or stupid, but hmmm... yeah I sort of  relied on classmates to answer when the teacher didn't loook, and I prefered it to ridicule or to be thrown out and made fun of for not understanding, I had to say mate what do I put, they saw my issue they helped, but man leaving primary to secondary to be fair I'm surprised I wasn't forced to resit every primary year like that adam sandler comedy lol.

Later I learned via mum and dads I was tested both primary and secondary for autism etc, the physchiatrists said nah he's just a naughty little boy! Honestly yeah I was to be fair but only coz I couldn't do maths or science I got thrown out and smoked in the toilets instead, in fact the school I told one physchiatrist I wanted to go to instead wouldn't accept me which was amazingly bad.



But had they got a support teacher who understood me and hand guided me I'd have got c's I ended up 7 E's 2F's 3 D's.


it took till 2010 until formal diagnosis left chool 1999.

I have dyspraxia and mild aspergers so they say I'd argue midling both.

My advice get your kids diagnosed and adults via gp and or physchiatric regional nurse like me it's the biggest relief ever being understoood and understanding your self.

[PHYSC]

Sorry badly spelt, yeah truth is you suspect your kid has autism but it can be dual condition lie me aspergers well |(high functioning autism spectrum disorder) so they say uk see tht labels you capable to a degree and lowest tier income disability, trust me that's mega low 60-64 quid over jsa yeah that is bad, rents paid and med care but man they cut the rent on anyone pre-liing in a 2 bed flat: yeah thanks conservative, course I can't work as unsafe to operate machines like press operation jsa state you do what is asked mainly press work, but me I am unfit, man they cut my esa 50gbp then argued rightly so I can't wake up can't go to job interviews they make a map for, man I'm lucky if I could follow a sentance telling me I'm not fit for work, I had to get my mp and highlight all their wrong capability for work assesment appointment documents with red circles in wordpad in windows just to fight my corner to get a reinstatement of my unfit for work assesment form, here in uk, the best of it was a physio reviewed it un-trained in my conditions, then tyhe dwp said nah send it for external review, that team immediately said yeah he's bang on in fact totaly unfit for work next review is 2yrs from then, it's a disgrace, So yeah if your kids suspect asd oand or dyspraxic my advice you both go gp spill their guts to gp tell the gp everythingm and if real lucky it goes to a district phydchiatric nurse she verifies it your on esa low end

[Sara_MHModerator]

Thank you for sharing your story.  Hope you come back to visit our forums.

[specialmom]

Hi!  Sorry for the late response.  I'm a mom too and it sure is challenging sometimes.  It's always hard to tell what is going on with our kiddos.  I would say that a true evaluation with a definitive diagnosis is essential here.  Do you live in the United States?  By law, asking for evaluation and assessment is allowed and has to happen. And if due to financial need your child needs something like OT or therapy, if they have an IEP and it is part of their plan, the school district has to fund the services.  Keep that in mind!  I get that schools fight it though. Sigh.  Been there.

We paid for 6 years of Occupational Therapy out of pocket.  It's a huge drain on finances for sure but WAS worth it. Always ask offices to consider reduced fees when you pay out of pocket. And I don't understand insurance companies dropping you when it is time to go for the evaluation.  Our insurance paid for the evaluation and for a few sessions with the OT after diagnosis and then we had to take over to continue. They gave us a reduced rate but we needed to pay at tine of service. ALSO, your city if you are in the US should have something in place to help.  Ask your pediatrician!  Our city has for birth to 3 where they assess and provide services based on income FOR you and once they get to school age, the school district is supposed to take over!!  

Now, I'm not sure about the special ed teacher's comments.  She probably shouldn't be trying to say exactly what is and isn't going on with your daughter.  Your daughter very well could be high functioning autism.  My son does not have autism though, he has sensory integration disorder which many autistic kids also have.  Your daughter's symptoms are similar.  Motor planning  difficulty can account for some of this which is part of the sensory system as can emotion dysregulation.  

Now, I see she does have an IEP. The school must provide services and do not ever sign anything that would reduce her IEP.  Don't let them remove!  Work within it.  But you do need a doctor at this point to direct you better for exactly what would help her so she can then have a plan that addresses it specifically.

As to a camp. I would not be comfortable sending my 6 year old with verbal communication skills away to sleep over camp.  Day camp, yes.  That is a good thing.  

Let me know how things are going.

PS:  my sensory son is now 15 and in high school.  He's doing quite well with strategies we used that we got when he was a toddler.  I'm happy to help you if I can!