Autism

[lauraw4321]

I have been concerned that my daughter may be on the spectrum. I had a hard time convincing my husband to even consider the possibility but had recently gotten him to at least consider the possibility.

 

We had our parent teacher conference today and I mentioned that autism might be an explanation for one of her "quirks." She responded "Well, since you mentioned autism, I'm sure she's in the spectrum." It felt like a punch in the gut. I'm planning on talking to our family practice doctor. I don't know what I'm asking for. A pat in the head. Someone to tell me it's ok. That getting a diagnosis will help and not hurt. That she will be ok.

[Jyhwkmama]

Hugs. Been there.

 

Get a good evaluation at the nearest university or children's hospital.

 

Knowledge is power. I wish I had sought evaluation sooner because the earlier a child is diagnosed, the more available programs.

 

Things can only get better from here.

[RegGuheert]

:grouphug:  No advice.  I will just say that it's a very tough call.  We always felt that DS18 was on the spectrum, but we decided not to discuss it with him.  When he was 16, we watched "Temple Grandin" together with him and he self-identified with her.  At the end of the movie, he asked if we thought he might be autistic.  We told him "yes", but just a little.  He sulked for a couple of days, but got over it quickly.  It is not a sentence but rather it is just part of who he is.

 

In his case, he has a very difficult time reading others.  OTOH, he is likely our brightest child and is a very fast processor.

 

He's having a wonderful time in his first year at college.

[Crimson Wife]

I would skip the primary care practitioner unless you are required to get a referral and go straight to a developmental pediatrician.

 

Even after my daughter had received 4 evals (developmental pediatrician, pediatric neurologist, school district IEP team, and Regional Center child psychologist) that all agreed on the high-functioning autism diagnosis, the general pediatrician claimed that she didn't see it. It wasn't until almost a full year later that she finally agreed my child had more than just a speech & language delay.

 

The diagnosis was hard on me emotionally but having it enabled my daughter to receive therapy that has been tremendously helpful.

 

You will adjust and it will become your "new normal".

 

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[lauraw4321]

So how do I find a developmental pediatrician?

[Pawz4me]

DS18 was recently diagnosed. I think it's been rather empowering for him, but he's very high functioning and is gifted in a few areas. The main thing the diagnosis has done is help him understand some things about himself (like why he's never been particularly interested in socializing, etc.). We pursued a diagnosis just in case he needs some accommodations when he goes to a four year university. He's in an early college high school program now and excelling w/o any accommodations, but we have a family member with ADHD who did fine until her third year of college. She hit a wall big time and there was much scrambling to get updated evaluations and get some accommodations in place. We didn't want to have that happen to DS.

 

All that to say . . . it is okay. ASD kids can be super cool kids. And they can succeed.

[Jyhwkmama]

So how do I find a developmental pediatrician?

 

 

Call your nearest major medical center. They can get you to someone who does evaluations.

[gardenmom5]

getting a diagnosis will help.  the school district will want to do their own assessments. - that can lead to more support services at school.  (which may or may not be as  much support as she needs.  they don't cover everything.)  since you've mentioned it to the teacher, and she agreed with you - it should get the ball rolling.  you may need to push the school for slp, pscyhologist, etc.

 

I would also have professional assessments done - it will "encourage" the school to be more 'honest' in their own assessments.  call and get on the waiting list now - before you see your ped.  some of them can take months.  through the school district, should be much faster. 

[lauraw4321]

getting a diagnosis will help. the school district will want to do their own assessments. - that can lead to more support services at school. (which may or may not be as much support as she needs. they don't cover everything.) since you've mentioned it to the teacher, and she agreed with you - it should get the ball rolling. you may need to push the school for slp, pscyhologist, etc.

 

I would also have professional assessments done - it will "encourage" the school to be more 'honest' in their own assessments. call and get on the waiting list now - before you see your ped. some of them can take months. through the school district, should be much faster.

So I call the school and say I want her evaluated for Autism?

[Crimson Wife]

So how do I find a developmental pediatrician?

 

I would start by looking here: http://www.sdbp.org/resources/find-a-clinician.cfm

[Melissa in Australia]

:grouphug:

 

I am wondering something like that with twin 1. He defiantly has some big indicators - hand shakes and leg shakes when excited. big sensory seeker, very impulsive, a set quirky behaviour when he gets sensory input including full body shakes, head jerking sideways and rubbing genitals all in a very set pattern, very very literal,......  but he has a very poorly wired brain due to trauma/post traumatic stress/RAD/plus things birth mother was using while pregnant that has led to significant global development delays. most specialists we see seem very reluctant to label him.... would it help him at all to have an autism label or just let him go with the label of Global Developmental Delays??? I don't know.

[myfunnybunch]

It's okay.

 

She is marvelously who she is, regardless of labels.

 

My adult dd with autism has a baby and lives on her own. She struggles with some things, but she has a good life.

 

Hugs.

[Crimson Wife]

:grouphug:

 

I am wondering something like that with twin 1. He defiantly has some big indicators - hand shakes and leg shakes when excited. big sensory seeker, very impulsive, a set quirky behaviour when he gets sensory input including full body shakes, head jerking sideways and rubbing genitals all in a very set pattern, very very literal,......  but he has a very poorly wired brain due to trauma/post traumatic stress/RAD/plus things birth mother was using while pregnant that has led to significant global development delays. most specialists we see seem very reluctant to label him.... would it help him at all to have an autism label or just let him go with the label of Global Developmental Delays??? I don't know.

 

I don't know about Australia, but here in the U.S., Global Developmental Delay is not considered a valid diagnosis after the 6th birthday. GDD was my child's original diagnosis at 24 months when it was clear that she had some sort of developmental disability but doctors weren't sure what. Honestly, I think it "fits" better than the HFA one she got at 34 months but she's now too old to have GDD.

 

Also, having a diagnosis of autism means that our health insurance has to pay for Applied Behavioral Therapy, speech therapy, and occupational therapy under our state's autism mandate. Furthermore, she qualifies for Medicaid to wrap around our private insurance and pick up the deductible and co-pays. Having Medicaid also meant the state paid for her hearing aids when our private insurance refused to.

[Janeway]

I do not think all kids on the spectrum need a diagnosis. Unless you want services, or just an explanation for yourself, I do not see the point.

 

I think I maybe have ASD. I am actually glad I was not dx'd as a child. I find that with my children with ASD, people are quick to blame them when something goes wrong. To others, it dimishes the child. At least, they see it as an excuse for them to be diminished. Such as, my oldest who has ASD was always way way ahead of the other kids at school academically. He amazed a lot of people when at kindergarten, first thing in the year, he could sit down with a science encyclopedia or such and read the words out loud. He was diagnosed by the end of kindergarten. Suddenly, I started hearing from people that basically, he wasn't actually smart, he just seemed that way because of the ASD. I had a GT teacher want him out of her class when she found out. She loved him before, wanted him gone after and claimed kids like him cannot actually understand what they are doing, even if he seems like it. On and on and on. 

 

It is your choice. And I know others will disagree with me. I really do not even have the answers. I am just fed up with how superior others feel the need to act when they find out someone else has anything at all that they feel can diminish the person.

[Melissa in Australia]

I don't know about Australia, but here in the U.S., Global Developmental Delay is not considered a valid diagnosis after the 6th birthday. GDD was my child's original diagnosis at 24 months when it was clear that she had some sort of developmental disability but doctors weren't sure what. Honestly, I think it "fits" better than the HFA one she got at 34 months but she's now too old to have GDD.

 

Also, having a diagnosis of autism means that our health insurance has to pay for Applied Behavioral Therapy, speech therapy, and occupational therapy under our state's autism mandate. Furthermore, she qualifies for Medicaid to wrap around our private insurance and pick up the deductible and co-pays. Having Medicaid also meant the state paid for her hearing aids when our private insurance refused to.

thank you for posting.

 

 

 I didn't know that children age out of GDD- maybe that is why I have just been notified that twins funding is being cut. I will ask his ex case-manager if this is the reason why funding is being cut. 

[kiwik]

I do not think all kids on the spectrum need a diagnosis. Unless you want services, or just an explanation for yourself, I do not see the point.

 

I think I maybe have ASD. I am actually glad I was not dx'd as a child. I find that with my children with ASD, people are quick to blame them when something goes wrong. To others, it dimishes the child. At least, they see it as an excuse for them to be diminished. Such as, my oldest who has ASD was always way way ahead of the other kids at school academically. He amazed a lot of people when at kindergarten, first thing in the year, he could sit down with a science encyclopedia or such and read the words out loud. He was diagnosed by the end of kindergarten. Suddenly, I started hearing from people that basically, he wasn't actually smart, he just seemed that way because of the ASD. I had a GT teacher want him out of her class when she found out. She loved him before, wanted him gone after and claimed kids like him cannot actually understand what they are doing, even if he seems like it. On and on and on.

 

It is your choice. And I know others will disagree with me. I really do not even have the answers. I am just fed up with how superior others feel the need to act when they find out someone else has anything at all that they feel can diminish the person.

That is why I am nervous about getting a diagnosis for ds7. There is something going on there although he has relatively few markers except frustration/temper. I am thinking ASD as one possibility. But he is a very bright child and he didn't have hyperlexia or anything and it is hard enough advocating for a gifted kid here without ASD as well. Edited November 22, 2016 by kiwik

[DawnM]

Hugs.  It will all be ok.  And getting the label helps.  That might sound weird, but it does.  You know where to go forward and have something to go with.

 

My oldest has Asperger's.  We have two Psych centers here who do the testing.  It was expensive even with some of it covered by insurance.  But we needed it.  We knew he had it by about age 7 but he was not officially diagnosed until age 14.

[SporkUK]

I am autistic as are some of my children. Whether an official diagnosis will help will depend heavily on your local area - for some it will allow a lot of great resources to become available and for others, there is a lot of talk about the "now what?" gap after going through the process because, especially beyond the early years, some areas have little. Personally, after how hard it was for my eldest who is...the most obviously autistic, I didn't bother again because my area is quite bad and still has a lot of Kanner-esque mentality of it being bad parenting, institutional conversion therapy type thinking which was just no for me. A developmental pediatrician evaluation will likely be helpful whether you move forward to formal diagnosis as a good one can point out specific areas that are going well and those that need help as well as know the difference between overlapping conditions which can give many people a lot more clarity. 

 

What autistic traits are you most concerned about? What traits is your daughter concerned about? We may be able to give advice and resources to help  while you go through the diagnosis process. I recommend neurowonderful and aspergerexperts who both have websites and youtubes full of information and I recommend avoiding autismspeaks and related cure-based charities as a lot of their information is badly researched and scaremongering which you really do not need. Reading books by and about autistic people and finding a local autistic community that has both autistic kids and autistic adults would also likely be helpful. The latter will likely be able to point you to more resources locally and both are important in building up a positive sense of self that many autistic people have difficulty doing in a culture very negative to us. 

[sassenach]

My friends were sure their dd was on the spectrum, but when she was evaluated, it turned out to be severe memory/processing disorder.

 

Get the eval and go from there.

 

(((Hugs)))

[lauraw4321]

My daughter has no concerns except for trouble relating to peers.

 

The tick we were discussing was her habit of spinning her hands. She also spins her arms at the elbow (hard to describe). She over stuffs her mouth with food. She flaps her hands when she's really excited. She hyper-focuses on things and sometimes has very rigid thinking.

 

She is so delightful and just comes across as an absent-minded professor type to me. She does have an ADD diagnosis.

[RegGuheert]

My daughter has no concerns except for trouble relating to peers.

 

This has always been DS18's biggest challenge.  Interestingly, what helped him the most with this was public speaking.  He actually excelled in this area because he didn't need to read individuals in order to apply his various other talents.  His success in that area has propelled him into a world where he relates well with others.  There is room for improvement, but he does well.

 

I realize your daughter is a little young for public speaking, but I thought I would share this as something that worked for us.

 

[Crimson Wife]

She is so delightful and just comes across as an absent-minded professor type to me. She does have an ADD diagnosis.

 

My daughter is very sweet, affectionate, and very much wants to interact with others. She struggles with doing so appropriately, however. When deciding on a tester, make sure that whomever you pick has experience with testing higher-functioning girls. Girls especially can present with ASD differently than the stereotype of the antisocial loner who hates being touched.

[SporkUK]

I agree with Crimson Wife that getting professionals that see beyond stereotypes is incredibly important, especially for underdiagnosed groups like girls. 

 

Trouble related to peers is a common and very sensible thing to be concerned about. Out of all the things you listed, that is likely going to have the biggest effect on her wellbeing. Sadly, books and programs on social skills and connections designed for autistic children and adults tend to be horribly prescriptive to the point of being unrealistic and unhelpful. The best ones I've found are designed for typical adults who want to improve socially and encourage testing and reflecting and having an adult break those down into child appropriate language. So, as an example, taking common greetings/icebreaker questions and practicing saying it in different ways [fast/slow, smiling/not smiling] and seeing how different people react. Similar can be done with different topics of conversation and seeing which work best with different groups of people. Treating it like a game to gather evidence to what gets the best reaction and best connection with others.

 

Relating to peers takes a lot of mental and emotion energy, even more in the beginning, so getting other less energy intense but often more draining than we think barriers out of the way is often helpful to allow more for social and executive function things. You don't mention any sensory concerns though the hand and arm spinning - while is not a big issue itself unless she's hurting someone or herself while doing it - and the overstuffing, which obviously is a choking concern - makes me think of proprioceptive and tactile sensory input needs. Especially the overstuffing, either needing more helping figure out how much can safely go in or safer ways to get a full mouth feeling like chew stim toys designed to safely be used that way might be beneficial. Learning awareness on this can help with the social awareness to help her relate to her peers.

 

Hyperfocus and rigid thinking are both an ADD and an autism things. It takes a lot of practice to deal with those and practice does make it better. As I've said to my spouse, I jump both feet and full heart into something and balancing it with other things is a constant effort for me. The best thing I've found for rigid thinking is going through the evidence which is often better done with another. What is the evidence for and against X. The resources I gave in my previous post will be able to give more for these areas if you're interested as I'm still working on those. 

 

Hand flapping is a good thing, especially if she feels safe enough in an environment to do so openly. Yeah, it's not a typical thing but it is an amazing way to emotionally regulate and without emotional regulation there is a massive barrier between a person and connecting to peers. Imagine having a strong emotion and with a simple movement that hurts no one you could physically channel it to either make it dissipate to make it more controllable or make a lovely feeling grow bigger and feel it throughout your body. That is what hand flapping and other stims like the hand and arm spinning do. Imagine now having those strong emotions and no longer having an acceptable way to manage them - they then create pain and walls around us.

 

Some stims need better channels like the overstuffing or in the case of my 12-year-old who does this shout thing whenever he has a strong emotion which he is working on finding better ways of handling because he finds its now getting in the way. My social butterfly 9-year-old literally hand flaps and bounces and giggles across the room at the same time when she's excited which hasn't caused her any issues. I, in my thirties, handflap when I have strong emotions and use stim toys and finding the confidence to do so openly when I need to has improved my life. It's left far more energy and better emotions for dealing with socializing and focus issues and common executive dysfunction.