misdiagnosis

[Guest guest]

Hi,

I am curious as to how many people have children with apraxia and

sensory issues who have been misdiagnosed as on the autistic

spectrum. My daughter is 3 now and is about a year behind in

expressive language though her receptive is age appropriate. She

definitely has sensory issues which we receive ot for and has made

tremendous strides w/ a prompt trained speech therapist. She is up

to multiple word sentences though she is very difficult to

understand. She still resorts to crying (and recently tantruming)

when she is frustrated instead of using her words. She is also

somewhat echolalic (copies what we say) She however has a

tremendous interest in socializing with other children and adults

though because of her issues her social skills are weak. She is very

affectionate and also pretty hyper.

We do not officially have a diagnosis of PDD-NOS (it has been

brought up by her therapists, though one dev. ped. declined to

diagnose her at this point and another pediatrician thinks

she " likely is PDD-NOS or high functioning autism " ).

I am wondering about the people who KNOW their children are not on

the autistic spectrum, but KNOW that they have sensory issues and

apraxia. What does that look like? What is the difference? I am

wondering if we have been somewhat misdiagnosed or if we are just in

denial? She is DEF. not classically autistic, of that we are sure,

but the " spectrum " is just so wide. Any help or experiences in this

area would be greatly appreciated. You can e-mail me privately if

you prefer.

Thank you so much, I learn so much from lurking here

[Guest guest]

I went o a conference a long ago, and they said this about autism diagnose:

The Child has the follow characteristics:

1. Didn’t speak until 3 years old

2. Repetitive behaviors, difficult in change the routines

3. Social impairment

If he spoke before 3 years old, and have the number 2 and 3 characteristics

then will be aspergers.

I’m going to search my archives to see where I saw this… I’m sure is from

University of Washington – Dr. Geraldine Dawson.

I think the frontier is a bit blurry. My son was first diagnosed with autism

and apraxia, a mistake because we are speaking different languages in the

assessment. In that time I spoke very little English and there was hundreds

of mistake in the diagnose process. From the 3 items that I told before the

only one that he misses is the speech. Our speech therapist questioned his

diagnose in the first month of treatment. The next assessment showed to be

apraxia. But I’ve been using a lot of knowledge from the autism community.

Believe they have a lot!!! I really believe we should not worried about

diagnose (unless if you need for insurance reasons). Make a list of your kid

deficits and look, search for tools/ways to help no matter witch diagnose

use this tools. It helped my kid a lot.

Hope it helps,

Giseli – WA

Mom of Igor – 5 years old

[Guest guest]

At 03:56 PM 2/19/2006, you wrote:

>Hi,

>I am curious as to how many people have children with apraxia and

>sensory issues who have been misdiagnosed as on the autistic

>spectrum.

I believe my son is misdiagnosed as autistic. His diagnosis is not high

functioning or PDD-NOS it is " moderate autism. " We already know that that

team misdiagnosed him with sensory issues and also initially said he was

congnitively delayed until I demanded a meeting with the cognitive

specialist! When she saw him again in a better environment she actually

had tears in her eyes...she said she had never in her life misdiagnosed a

child so severely! And she had a long career. She retired a few months

after my son's eval! We've been on a rollercoaster for the last two years.

>My daughter is 3 now and is about a year behind in

>expressive language though her receptive is age appropriate.

My son is almost 4.5 and is 2 to 3 yrs behind in expressive (depending on

which test - he has about 200 words intelligible to family with

inconsistent pronunciations) and he also has receptive delays, but not as

severe as the expressive. His SLP believes that he is not storing language

correctly because he is not saying words correctly. We also suspect some

auditory processing issues. He does many things non-verbally that are age

appropriate, and even with communication he corrects and criticizes which

are appropriate milestones for a 4 yr old. This usually consists of

saying, " No, not ____. "

> She

>definitely has sensory issues which we receive ot for and has made

>tremendous strides w/ a prompt trained speech therapist.

Prompt is what finally started improvement for my son after TWO YEARS of

regular speech therapy with virtually no progress! Unlike your daughter he

has no sensory issues. He was misdiagnosed with this by the same team that

diagnosed him as autistic and he was in OT for sensory issue for a year but

it was pointless!

>She is up

>to multiple word sentences though she is very difficult to

>understand. She still resorts to crying (and recently tantruming)

>when she is frustrated instead of using her words. She is also

>somewhat echolalic (copies what we say)

Until recently my son was very echolalic which everyone said was a red flag

for autism. I never believed it was echolalia in an autistic way, but that

he was trained to do it. Others think I'm nuts, but I feel that with all

the speech and other therapies he was trained into knowing he had to give

some response so he'd just repeat to be left alone. Now the ONLY times he

exhibits echolalia is when he's tired (or as I say, DONE, which happens

after 45 mins of very focussed therapy) or when he isn't really paying

attention or is uninterested in what someone is saying to him at that time.

> She however has a

>tremendous interest in socializing with other children and adults

>though because of her issues her social skills are weak. She is very

>affectionate and also pretty hyper.

Hyper can be related to sensory. My son tests one point outside of norm in

modulation with respect to movement which basically means if you get him

going he's hard to stop and hard to refocus. Usually it is not a problem,

but his brother is very active so when the two of them get going...well

he's in tears now from being too rambunctious and getting hurt and I have a

soaked bathroom floor right now after their bath as an example. All

logical thought goes out the window once they get going!

>I am wondering about the people who KNOW their children are not on

>the autistic spectrum, but KNOW that they have sensory issues and

>apraxia. What does that look like? What is the difference?

Well I can't say for the sensory because he doesn't have problems there,

but the difference I've seen between my son and kids truly on the spectrum

is first the behavioral issues. My son has none, autistic kids usually

do. From what I've heard kids with sensory issues ALSO have a lot of

behavioral issues. The biggest thing aside from that is a chicken/egg

thing. My son is delayed socially because he has speech/lang

issues. Autistic kids are delayed in speech/lang because they are delayed

socially. The autistic child at my son's school can't sit in group time,

can't initiate play with others (she does join in if asked) and has to be

prompted verbally for speech, but when she talks her speech is fairly

clear. My son initiates play, and more importantly has imaginary play. He

needs to be prompted for speech multiple times if it is an auditory

prompt. If it is a tactile prompt (like with PROMPT) he does it

easier. Also autistic kids usually have very little eye contact. This is

not always the case, but often is. From the kids I know on the spectrum

they have a look...hard to describe, but it's not what I see in my son's eyes.

>I am

>wondering if we have been somewhat misdiagnosed or if we are just in

>denial? She is DEF. not classically autistic, of that we are sure,

>but the " spectrum " is just so wide. Any help or experiences in this

>area would be greatly appreciated. You can e-mail me privately if

>you prefer.

I've been told the line " the spectrum is so wide " and been accused of being

in denial for almost two years now! My son is at a private preschool

(placed there by the pub schools) and we have been fighting the public

schools forever about his services. Well they FINALLY sent two observers

to his school. One is a social worker and the other an autism

expert/consultant. BOTH are now questioning if he is even ANYWHERE on the

spectrum. His peditrician has always questioned it, the ped neuro we went

to for a second opinion questioned it, his speech therapists (private and

through the schools) question it. It infuriates me that when I tried to

say I disagreed the school administrators shut me down, accused me of

denial and said he would get NO services unless I accepted it. (He was not

diagnosed as apraxic until this past August - we're in NM and went to

PROMPT and the diagnosis is by Deborah Hayden herself so I trust it!) Now

the schools want to get rid of the diagnosis ASAP because they don't want

to give him the services they owe him for the last five months (IEP was in

May, amended in Sept to double speech and his FIRST hour of speech this

school year was last week!!!) They now want to get him evaluated by a

psychiatrist. I don't think that a single psychiatrist is qualifed to

diagnose him. I want to wait until next winter or spring when our spot on

the waiting list with the best clinic in the state comes up. That will be

the most accurate re-evaluation for him. At this point the diagnosis

doesn't matter because the therapies are appropriate. It took me a long

time to get to this point, but now we have things that are working and I

don't care what they call it. We'll clear that up in a year.

So anyway that is our long saga, but I too have been asking the question

for two years about how many kids are being MISdiagnosed with autism these

days. Yes, it IS a wide spectrum, but it seems that they apply it to a lot

of young kids and then expect the parents to be grateful because it will

get them more services. What it got my son was harsh, strict ABA therapy

which HURT him, depressed him, frustrated him. And it got people to stop

considering apraxia which is what I figured his diagnosis would be when I

took him to the early childhood team. I feel like we had 18 months of

lost time until I heard about PROMPT and took him to be evaluated privately.

So accept therapies that you feel are working for her, stick up for her if

you think something is harmful, and try not to stress too much about the

diagnosis. As kids grow these things usually become more clear.

Miche

[Guest guest]

Hi .

I am new around here and have not even introduced myself to the group,

but I really wanted to respond to this. Here's our story ...

My daughter is 2 years, 9 months old. She was diagnosed with Apraxia

about 3 months ago. She has been receiving Early Intervention services

for about 7 months now. About 1.5 months into therapy, our SEIT and SLP

came to me jointly and told me that they suspected was on the

spectrum. This is because, at that time, was completely

uninterested in participating in therapy. The therapists could not

really get her interested or lure her into being interested in their

toys. They couldn't get her interested in her OWN toys. Her eye

contact was hard to sustain, At that time, she would occasionally flap

her hands and toe walk, which of course, was very disconcerting. Right

after that, an appointment was made to have her evaluated by a Pediatric

Psychologist. Miraculously, it only took us a month to get in, as some

new Psychologists were just brought on board.

Naturally,we were devastated.

Funny thing, though, during that month before the appointment with the

Psychologist, seemed to almost turn on a dime and started

interacting with the therapists and participating. She made such

immediate progress that both therapists told me that they were most

likely mistaken even before the appointment with the Psychologist. She

was found NOT to be on the Spectrum and that opinion was seconded by a

Developmental Pediatrician in December. She was seen to engage in joint

attention, have communicative intent, play with toys appropriately,

express needs/wants and show affection with us. Since then, has

not turned back and is doing really well.

In November, has an OT eval and was found to have slight oral

motor sensory issues and slight fine motor issues. Additionally, I

beleve that, by the time that she began with Early Intervention, she was

almost shutting down and not bothering to communicate anymore, since she

was so frustrated. She was banging her head on the floor from

frustration. At that time, she also had problems attending to

non-preferred activities (hence, the need for SEIT services). I think

she avoided social interactions because she KNEW, even then, that she

couldn't communicate normally and was hesitant to try, at all. She is

still considered socially immature by her SEIT, which makes sense, since

her verbal communication skills are also delayed, of course, due to the

apraxia. The hand flapping was almost certainly a sensory issue, as

was the toe walking. Toe walking is definitely tied to speech delays,

believe it or not. The hand flapping has decreased markedly, the head

banging has stopped (she is starting to talk more and is also signing,

which has reduced her frustration immensely), and her willingness to

socialize has increased now that she is understood more and is gaining

more confidence. Her ability to attend to non-preferred tasks has

markedly increased. Her eye contact has markedly increased, although

she sometimes tries to ignore you if she doesn't want to do what is

being asked of her. She still doesn't really engage in a lot of

symbolic play, but our Developmental Pediatrician says that is directly

related to the Apraxia; as her speech emerges, so will her symbolic

play.

I know that I have blathered on and on. I hope that this helps.

Please, feel free to ask any questions or clarify, if you like.

Warm regards,

******************

(Rochester, NY)

Mom to , 2.9 years, Developmental Verbal Dyspraxia

& , 7 months

________________________________

[Guest guest]

My Dade is High functioning autism. He doesn't not stim (like hand flapping) or

" look " autistic. He has global apraxia. His autism, he scored a 27 on the CARS

test. 30 is autistic. So very mild case. He was diagnosed at 3 and half

before that I would have told you they were so wrong. Now with what I know I

know it is right and social delays and such are coming out. Dade is now getting

a lot of speech but still can't tell me something hurts. I'm still guessing a

lot when I have to take him to the doctor but he is using sentences now and can

tells us wants. He's move more into a communication delay then a speech delay

now. He has no problem with change. He is a Navy brat and a normal kid would

have problems with the major changes he has had and he did them with no

problems. But if he is expected to do something he needs routine like at

school. He is a running and wonderer. Doesn't really have a sense of danger

which is different then no fear. He is obsessive and yes has echolia. I go to

a mom's autism support group and though Dade doesn't have a lot of the big issue

he shares a lot of the lesser know ones. Like sleep and bowel movements. Eye

contact is a big one but we think Dade might be in part to eyesight problem.

Joint attention is a big flag. You should be able to point and say look at that

and your child should look at you, look at where you are pointing and then back

at you. Dade has social delays. Social delays are more then wanting to play

with peers and affection. Dade is very affectionate and really wants to play

with typical peers. Social development includes things like eye contact, joint

attention, " checking in " with mom. I'm sick so I'm hoping my thoughts are

getting across and not in a big jumble.

Nichole

Mom to Dade 11/29/01 and Leia 2/7/04