preparing myself..... possible autism diagnosis

[HappyLady]

My DS is almost 3.  So far, all I know is that he's speech delayed.  He definitely doesn't talk like an almost 3 year old, but he does have a pretty extensive vocabulary (I'd guess at least 200 words).  If you ask him what something is he can tell you most of the time, but he only uses about 4 to 5 two to three word sentences.  And it's difficult to figure out if he's understanding everything that is said to him.  Most of this hasn't concerned me, but what has concerned me for a long time is the amount of tantrums he has.  His tantrums are out of control.  I can't take him anywhere or do anything with him without it resulting in a meltdown.  I'm sure a lot of this is because of his communication issues, but I've always suspected there was something else going on with him.

 

I had him evaluated about 6 months ago and after the evaluation I asked all 3 people that evaluated him if they thought he was autistic and right away they said, "Absolutely not," "No way," etc.  He did qualify for services because of his speech delay and after his two speech therapists got to know him and such I asked them each if they thought he was autistic and they both said, "Oh goodness, no," "Not at all," etc.

 

Yesterday he had to go for his final evaluation to transition from the Early Intervention program to the CPSE program because he'll be turning 3 soon.  Yesterday he met with the psychologist (last week he met with a special ed specialist and a speech therapist).  I sat in on the evaluation and my DS did really well.  Once the psychologist was done with my DS she went through a series of forms with me and had me answering all of the questions.  The last form was a checklist for autism.  I wasn't worried because everyone has assured me that he isn't autistic.  After going through the form I still wasn't worried because these particular questions didn't describe my DS at all.  Even after all of that, the psychologist threw me for a loop and said though he doesn't outwardly appear autistic, he does have some of the tendencies.  I do agree that when I read up on autism that he does fit some of the qualifications, but so do a lot of kids I know.  And the psychologist did say that you can read up about anything and everyone would qualify as "something."  But still, she said she is going to review her findings with the other people that evaluated him to see what their thoughts were about him being on the spectrum.

 

I guess I want to know is, can a child really be diagnosed as being on the spectrum at such a young age?  And if so, would a second opinion be a good idea?  It's not that I wouldn't accept an autism diagnosis, but I don't want him labeled with something if that's not really the case.  I do believe something is going on, but I just figured it was some sort of processing disorder or something.  Is that something that would make a kid autistic?  I guess what's also making me not want to believe an autism diagnosis are the examples this psychologist gave.  She said my DS parroted her a lot.  Yes, he did repeat what she said a few times, but not a lot though.  And he does it with me sometimes, but I think it's just him trying to learn how to talk.  My DD is 5.5 and definitely NOT autistic and will sometimes repeat what I say, too.  Most often with the two of them, they'll repeat things if I yell out like, "Dinner's ready!"  Both of them will yell it so the rest of the family knows to come to the table.  Another example she gave was that he didn't look her in the eye much, but she even said it could be because he didn't know her.  My DS definitely doesn't have a problem looking people in the eye.  In fact, recently he's really come out of his shell and he says hi to just about everyone he sees and looks right at them as he's doing it.  Another example is how he knew his letters, numbers, and colors at such a young age, well before his peers did.  She said most autistic kids will learn those things at a young age.  But my DD knew them at a young age as well and today she's just a smart kid.

 

Sorry for rambling, but I'm just so upset/taken aback by all of this.  I just want to make sure my DS is diagnosed properly so he can get the proper help that he needs.

 

If you've made it this far, any thoughts or suggestions?

 

**Edited to say that my DD is NOT autistic.  Sorry about that!  :)

[Guest submarines]

HUGS. No suggestions, but trust your gut and ask for second opinion if you aren't happy. From just what you are describing, and also what the psychologist did say, many children exhibit these kind of behaviors.

 

I also feel that children are expected to perform beyond what is normal and that these kind of behaviours are normalized by the professionals. For example, my family doctor told me that she suspected DD had anxiety because when she was 9, two years ago, she was shy about showing her rash to her. The doctor commented that most children show their rashes in a very casual way and are not shy about them. Well, I reminded that doctor that DD's rash was on her buttocks, and personally, I wouldn't find it normal if a child experienced absolutely no discomfort at needing to show her buttocks to a doctor she just met. It is not like she didn't comply back then, she did, right away. She just wasn't too eager! lol

[Arcadia]

 

I guess I want to know is, can a child really be diagnosed as being on the spectrum at such a young age?  And if so, would a second opinion be a good idea?  It's not that I wouldn't accept an autism diagnosis, but I don't want him labeled with something if that's not really the case.

This is second hand information. My neighbors' and friends' kids were diagnosed before three so it is possible to get that "label" before that.  However the "label" is in no way cast in stone. In bureaucracy speak, the label is more of a place holder for 504/IEP down the road if the child enters public school and also to account for services from 3-5 years old in some cases. The "label" changes too as your child sees different evaluators. A good friend's boy was first "labeled" as autism to get services since he was a toddler to being diagnose as Asperger's later on. Some will go from the generic autism label to PDD-NOS.

 

"ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable.¹ However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need." from CDC.gov website

 

You might want to cross-post at the learning challenges board (Sub-forum) for more BTDT experiences.

[Dandelion]

 

I guess I want to know is, can a child really be diagnosed as being on the spectrum at such a young age?  And if so, would a second opinion be a good idea?  

 

Yes, a child can be diagnosed with an ASD at a young age (I know some families whose kids were diagnosed with autism at 18 months).  But if you are uncomfortable with the diagnosis, a second opinion can't hurt.  

 

It's also possible that your DS is picking up "autistic behaviors" from his older sister.  That's fairly common among the families I know (I know a large number of families with kids on the spectrum because of the work I do with a local autism support organization - my DS is also dx'd with Asperger's). 

 

The two main issues you mentioned - speech delay and massive tantrums - do not warrant an autism diagnosis in and of themselves.  What else did the psychologist note?  How does your DS relate to other people, especially kids?  Is there anything else about him that appears "atypical" compared to other kids his age?

 

If you decide to seek a second opinion, try to find a psychologist/other professional who does not specialize exclusively in autism.  Some specialization is good, but I've found that doctors who only deal with autism tend to see autism in every child they treat.  Because that's what they're looking for.  If you go to someone who deals with autism as well as other neurological issues/differences, they will be more likely to consider a broader range of diagnostic possibilities.   :grouphug:

[Tammyla]

:grouphug: No advice, other than to follow your gut.

[dirty ethel rackham]

:grouphug:

I concur that you would need a 2nd opinion from someone who does not treat only autism.  You want someone who looks at the wider picture.  One thing to think about ... Does he have sensory issues (especially auditory processing issues)?  Often, these can be the root of behaviors that can look like those of someone on the spectrum.  My middle son had many issues that you describe and his problem was definitely sensory related.  He was a sensory avoider, had auditory processing problems and an older brother who insisted on speaking for him.  In addition to the expressive language delay, he had major melt-downs every day due to the fact that I cut his toast in squared instead of  triangles or he couldn't stand the shirt with pockets or there was singing in church.  We went took advantage of speech therapy at the local public school mostly to help him learn to deal with situations that weren't mommy-directed and we did neurodevelopmental therapies for his sensory therapies since the school refused to acknowledge any testing that revealed that his problems were sensory related.  We could have gone the OT route, but that would have meant leaving a once a week appointment vs. short activities done at home every day.  He made great progress and the tantrums decreased tremendously after we started neurodevelopmental treatment.

 

I do notice that his auditory processing problems have not completely disappeared, but he can function in society. 

 

BTW, in your original post, did you mean to say that your daughter does NOT have autism? 

[Catwoman]

Be really careful of the checklists. It seems like almost anyone would be diagnosed as possibly being on the spectrum if an evaluator did nothing more than run down the list and check off every little thing. That's why it's so important to get an evaluator you trust.

 

Many late talkers are misdiagnosed as being on the autistic spectrum, when they are not, because the person who evaluated them didn't take into account their ability to comprehend everything being said to them. It sounds like your ds has strong receptive language skills, which would lead a complete amateur like me to feel that he's probably not autistic.

 

Also, even a non-autistic kid is quite likely to develop some unusual behavior patterns if he lives with an older autistic sibling, simply because he's imitating the sibling's behavior.

 

I think you are smart to have your ds evaluated if you have concerns, as long as you keep in mind that evaluation results aren't cast in stone, and that evaluators can make mistakes, especially if they are mainly box-checkers and don't appear to be looking at the big picture.

[NASDAQ]

Yes, a child can be diagnosed that early, but "a few autistic traits" does not a diagnosis make. Many of the traits of ASD (and a lot of other things) are matters of degree, which is why it's so important to get a professional to make the judgement call. Just going down the checklist and ticking boxes might alert someone that there _could_ be a problem, but can't confirm that there _is_ a problem.

 

It sounds like she's just being cautious. Don't worry unless she says there's ASD, and then get a second opinion.

[VeritasMama]

I agree, don't worry about it now. If there is a diagnosis, get a second opinion.

[Jan in SC]

Children with speech issues frequently have tantrums at a later age because they cannot effectively communicate and it frustrates them. If your gut doesn't think autism, then get a second opinion.

[HappyLady]

 

It's also possible that your DS is picking up "autistic behaviors" from his older sister.  That's fairly common among the families I know (I know a large number of families with kids on the spectrum because of the work I do with a local autism support organization - my DS is also dx'd with Asperger's). 

 

The two main issues you mentioned - speech delay and massive tantrums - do not warrant an autism diagnosis in and of themselves.  What else did the psychologist note?  How does your DS relate to other people, especially kids?  Is there anything else about him that appears "atypical" compared to other kids his age?

 

 

 

Sorry, I meant to write that my DD is NOT autistic (I fixed it in my original post).  As far as my DS being different from other kids, the only thing I see is the speech delay and tantrums.  He plays ok with other kids when he's not having a tantrum.  When he plays with his cousins though, (ages 17, 13 and 8) he plays just fine and has a great time.  He plays with age appropriate toys/games and seems to do everything correctly.  The only thing I'd say he can't play with is board games because he'd rather play with the pieces than listen to instructions and play the game the right way.  He can sing his ABCs and other typical kid songs, (Twinkle Twinkle Little Star, Old Macdonald, etc), he can dress and undress himself, eats and feeds himself just fine, can almost buckle himself in his carseat by himself........  There's really nothing other than the speech and tantrums that sets him apart from other kids.

[Catwoman]

Honestly, he sounds perfectly normal to me. A lot of absolutely normal, very bright children are late talkers and have tantrums.

 

I truly think he's fine, and I'm not saying that just to make you feel better. I really believe it.

 

:grouphug:

[HappyLady]

:grouphug:

I concur that you would need a 2nd opinion from someone who does not treat only autism.  You want someone who looks at the wider picture.  One thing to think about ... Does he have sensory issues (especially auditory processing issues)?  Often, these can be the root of behaviors that can look like those of someone on the spectrum.  My middle son had many issues that you describe and his problem was definitely sensory related.  He was a sensory avoider, had auditory processing problems and an older brother who insisted on speaking for him.  In addition to the expressive language delay, he had major melt-downs every day due to the fact that I cut his toast in squared instead of  triangles or he couldn't stand the shirt with pockets or there was singing in church.  We went took advantage of speech therapy at the local public school mostly to help him learn to deal with situations that weren't mommy-directed and we did neurodevelopmental therapies for his sensory therapies since the school refused to acknowledge any testing that revealed that his problems were sensory related.  We could have gone the OT route, but that would have meant leaving a once a week appointment vs. short activities done at home every day.  He made great progress and the tantrums decreased tremendously after we started neurodevelopmental treatment.

 

I do notice that his auditory processing problems have not completely disappeared, but he can function in society. 

 

BTW, in your original post, did you mean to say that your daughter does NOT have autism? 

 

Yes!  Thank you for catching that!  My DD is definitely not autistic.  

 

How do you go about getting neurodevelopmental treatment?  I've often said I think my DS has sensory issues, but when they evaluated him they said he didn't.  I know when he was younger he used to freak out when we went someplace new.  It took him awhile to get used to new places, but when we'd first go I'd have to carry him in and then he'd practically be trying to crawl over me to get out.  He'd say, "Outside! Outside!"  Then he'd be fine the second my hand touched the door to leave.  He's gotten much better with that, though.  Though I do suspect he gets overwhelmed places at times.  Something recently he throws a fit about is he wants to sit in his sister's carseat instead of his own.  I don't know why, but if I put him in his carseat he has an absolute fit.  I'm sure this won't last long though, as the other "odd" things haven't.  But I know a lot of that is typical of most kids so those things don't really worry me so much unless I look at the big picture.

[gardenmom5]

there are multiple causes of autism (three different genetic causes alone), and there are ways to help.

I would *strongly* suggest a naturopathic doctor who specializes in ASD/ADHD/etc kids.  they can help make sure his body is working at the best level.  allopathic providers tend to be skeptical - but it can help.

 

I am amazed at some of the improvements my son has made - and I have to remind myself of what he was like before I started.  I recognized his sensitivity to nitrates before I started having him evaluated, and just removing those helped.    we've seen a lot of progress.

[Hwin]

My son was diagnosed at 2 yrs, 4 mos and the dx was spot on, although we didn't agree with it for a few months. A good developmental pediatrician should be able to assess  your son but I agree with getting a second opinion. 

[Tiramisu]

I've been hearing quite a lot about kids being dx'd with autism, or autism spectrum disorder who don't appear clearly fit the criteria or present atypically. I've come to the conclusion that this is happening because it's the only way some kids, who may or may not be actually autistic but who have significant difficulties, obtain very necessary services that they wouldn't otherwise qualify for or be able to afford on their own. 

 

I have heard many stories of kids getting an ASD dx at a young age who get good therapies, including neuro-developmental and dietary intervention, who grow up and definitely don't have autism. I wouldn't focus on the label but on what services you can get to help with his difficulties.

 

  :grouphug:  :grouphug:  :grouphug:

[Tiramisu]

I'll just add that I'm all for getting to the bottom of things, but sometimes I don't know with this stuff if there's always a clear answer. There's no problem in getting many different opinions, and they can help your understanding of the issues and investigate treatment options, but you could get a different take on it with each specialist you see. Sometimes I've so very much wanted a name for what's wrong with my different kids but I don't think I'll ever get one that fits perfectly and explains everything. At the same time, in the searching, I have been able to understand things better.

[planner]

My son was diagnosed at 21 months.  I was told by the early intervention folks from the school district not to worry about seeking a diagnosis when I asked if they thought he was autistic.  I later found out they weren't allowed to suggest getting a diagnosis.  I ignored their advice.  You need to do what you think it right for your child and ignore the other voices out there.

[scrapbookbuzz]

I have a daughter who is on the spectrum. she has Aspergers. She, too, at a young age had an extensive vocabulary and could easily carry on a conversation with any adult.

She also used to be quite gregarious. However, abrupt changes in activities really through her and seemed to make her mad, thus resulting in a tantrum.  When she was about 9/10,

after a round of immunizations, she began hitting her head with her fists when she'd have a meltdown. I began doing some research based on a variety of factors and discovered she has 

Aspergers. I also had her assessed.

 

IMO, I do think that under 7 is probably too young for a diagnosis for Aspergers. I understand from people who have BTDT that extreme autism is quite evident at a young age. Because

Asperger kids are so fluent in language and usually have high knowledge in at least one area, it may just be mistaken for just being precocious.

 

From what you've said about your kiddo, there definitely seems to be a sensory processing issue going on. As for the meltdowns, at least for autistics, those are more about not being able

to communicate what's going on inside them then actually being defiant/rebellious.  There are a couple of great pages on facebook you might want to look into:

 

Karla's ASD Page: Karla is an almost 50yo autistic woman who also works with autistic kids.

She often shares what is going on in her life and how it affects her and what she sees

when parents bring their autistic kids to her.

 

ThAUTcast: Landon is also autistic and he shares various viewpoints on things.

 

Whatever the ultimate diagnosis, mama, BREATHE!  Even if the Aspergers lands in there somewhere it really is not the perceived 'death sentence'. Your child just is somewhat neurologically

different and THAT IS OKAY. It just means your kiddo will probably figure out how to get us to live on the moon or something so out of the box that no one else but your little one would have

the perspective to figure it out!  :hat:

[TechWife]

This is second hand information. My neighbors' and friends' kids were diagnosed before three so it is possible to get that "label" before that.  However the "label" is in no way cast in stone. In bureaucracy speak, the label is more of a place holder for 504/IEP down the road if the child enters public school and also to account for services from 3-5 years old in some cases. The "label" changes too as your child sees different evaluators. A good friend's boy was first "labeled" as autism to get services since he was a toddler to being diagnose as Asperger's later on. Some will go from the generic autism label to PDD-NOS.

 

"ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable.¹ However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need." from CDC.gov website

 

You might want to cross-post at the learning challenges board (Sub-forum) for more BTDT experiences.

 

Just to update you, Asperger Syndrome and PDD-NOS have been eliminated as official diagnosis with the new edition of the DSM5. You can read more here and here if you're interested. 

[Arcadia]

Just to update you, Asperger Syndrome and PDD-NOS have been eliminated as official diagnosis with the new edition of the DSM5.

I am aware of that. Thanks

[Mergath]

Try not to worry about it.  The checklists for autism are so broad now that I think half the preschoolers I've met could be diagnosed.

 

My dd was slow to talk as well, and wanted nothing to do with other kids for quite some time.  She went through a phase where she'd hit her head against things when she got upset, and her eye contact was horrible as a toddler.  Then we found out she has a genetic disorder that gives her a one in three chance of having autism.  As you can probably imagine, that clinched it for me.  I was sure she was autistic.

 

Then we found out that the speech issue was mostly caused by low muscle tone.  She had constant ear infections, so that probably had something to do with the head hitting.  Once she started speech therapy and began speaking more clearly, she couldn't get enough of playing with other kids.

 

Now she's five, and is perfectly, completely normal, and academically advanced.  No signs of autism whatsoever.  She learned her letters and numbers extremely early, too, and now reads several years above her level.  Still not autistic. ;)

[kiwik]

From reading various threads on this sort of thing it does often seen to be a way of getting intervention for a child who needs it for other perhaps non-qualifying reasons. Also the changes made to the diagnostic manual limit the choices more so autism will have to be used more.

[sewingmama]

My DD was similar to your DS. Severe tantrums from the age of 6 months. Speech delayed. Minimal eye contact. No pointing. She was evaluated several times for autism. Turns out she has SPD. Does your son have sensory seeking or avoidance behaviours? My DD is 7 but still a preschooler when it comes to sensory play. When she paints she paints her hands, squishes it, puts her feet in it. When we bake she plays for ages with a bowl of flour, dropping it through her fingers, writing with it on the bench, rubbing it through her hands. She also is avoidant of noise, can't focus with background noise going on and is an extreme picky eater ( texture avoidant since birth).

 

There are lots of other diagnoses that can mimic autism. I never thought my dd was autistic....she is a social butterfly.

[HappyLady]

My DD was similar to your DS. Severe tantrums from the age of 6 months. Speech delayed. Minimal eye contact. No pointing. She was evaluated several times for autism. Turns out she has SPD. Does your son have sensory seeking or avoidance behaviours? My DD is 7 but still a preschooler when it comes to sensory play. When she paints she paints her hands, squishes it, puts her feet in it. When we bake she plays for ages with a bowl of flour, dropping it through her fingers, writing with it on the bench, rubbing it through her hands. She also is avoidant of noise, can't focus with background noise going on and is an extreme picky eater ( texture avoidant since birth).

 

There are lots of other diagnoses that can mimic autism. I never thought my dd was autistic....she is a social butterfly.

 

I would have to research sensory issues more to say whether or not he has sensory seeking or avoidance behaviors.  Using your examples, he does like to paint on himself when he paints, but he also paints on paper.  I would say he has been painting less on himself lately, though.  I've never let him play with flour, but I don't see him ever acting that way with other comparable things like sand or something.  I've never really seen him avoid noise.  In fact, he likes to make a lot of it.   :lol:  And he's definitely not a picky eater.  But I'll definitely look more into the characteristics of what you mentioned!

[kbutton]

My son was recently diagnosed as being on the spectrum (he fits the old criteria for Asperger's). He is nine. We really didn't see it coming until recently. I would like to say we would have been open to the diagnosis earlier, but I am not certain. We certainly recognized some of his side issues, but the "problem" is that he didn't seem like other Asperger's kids we've been around. (Hence the meme, "if you've seen one kid with ASD, you've seen one kid with ASD.") After all, he is extremely caring, so he can't lack empathy (but, "oh yeah...if he runs someone over by accident, he doesn't need to apologize because the other person can read his mind and know it's an accident, right?"). "Oh yeah, he doesn't seem to be able to tell that someone is angry with him." His symptoms are subtle. They can look like ordinary behavior except for when you compare it to others his age, etc. He can hold things together by sheer will until all of the sudden, he can't do it anymore, and everything hits the fan. At three, all of it was in the range of normal, but he was difficult--meltdowns, etc. He had some signs, but it just depended on how a person framed the behavior. His stims are all things neurotypical kids do too, but he does them a lot more often, a lot louder, persists in them longer, and often does them without realizing it (they are mostly vocal, and other kids have long outgrown this stuff). Those are just some examples of how much he is like other children when you are seeing things in isolation. We really saw these symptoms as minor quirks until we took him out of his former school environment and started attending a new church shortly thereafter. Suddenly, he was in a new situation, and those quirks became more pronounced. In addition, other kids outgrew some of their similar behaviors, and he did not. The older he gets, we realize that he has no idea how to ask appropriate questions or even realize he needs to ask a question, his thoughts about a situation are drastically different than ours (especially social niceties), etc. That kind of stuff was not really apparent at three.

 

Your child may outgrow all of this stuff, or he may grow into it more fully as our son did. Our psych said that we intuitively remediated some of his more severe symptoms by just working with him on day-to-day stuff (flexibility, etc.), but that work certainly took its toll on us over time.

 

I agree that getting a second opinion with someone who will look broader than autism spectrum disorders could be really helpful. We actually did something similar (avoided a second ADHD specialist). If you aren't comfortable with a diagnosis at this point, you might find that a book such as The Mislabeled Child by the Eides is a good place to get information that will help you in the meantime with practical issues. I can't remember the name of the book, but there is another book that offers helpful suggestions for problems that apply to a variety of issues--sensory, attention, meltdowns, etc. It's meant to help people whose kids are diagnosed or undiagnosed with day-to-day coping strategies. I will post it later if I can figure out what it's called.

 

My biggest suggestion is to take detailed notes (with dates) and to keep an open mind for later down the road. You could start a file, or you could jot thoughts on your calendar and be sure to keep it long-term (this makes dating your thoughts easier). Be specific about situations, responses, circumstances, etc. You might even ask people who work with him for a description of his strengths and deficits so that you can look at them down the road to see if a pattern emerges. Take some videos and save samples of crafts, etc. that he does. You don't have to document every little thing, but do be sure to document offhand comments that may seem odd. We used to think my son's Montessori teachers were nuts when they said he had problems with fine motor skills and gross motor skills because he could string beads at 18 months, knit at 3.5, met all his milestones early, etc. Well, he does have motor issues--his scissors skills haven't changed much since he was three (talk about meltdowns!), he has trouble catching a ball, etc. When he swims, one side of his body doesn't move as well as the other. It's just that what he does well, he does really well, and what he does poorly, he does really poorly (and all of it goes down the tubes under minor stress). He also has vision problems (evaluation coming up next week), so some of it may be related to that, but apparently even that goes along with ASD.

[sbgrace]

Well, most of what you wrote as her notes are side things to autism in my mind. But EI therapists were sure my spectrum son wasn't on the spectrum either (he's got such great eye contact, he's so friendly, etc. etc..none of which really means a thing). Anwyay, EI should refer you to a specialist for evaluation. That specialist should know autism. For someone who knows what they are doing, 3 isn't at all too young to dx. Make sure you understand why or why not-get your questions answered. If you still have questions, do a 2nd opinion. We did. We got another dx. But I understood what they were seeing that time. I "got" it.

[G5052]

Try not to worry about it.  The checklists for autism are so broad now that I think half the preschoolers I've met could be diagnosed.

 

Bottom line with a "heavy" diagnosis, always get a second opinion from someone who deals primarily with that.

 

Little kids on the borderline can change, so I'd remain flexible if there is some doubt.  A relative of ours works with autistic kids in an early intervention program, and she's has one or two every year who "graduate out" because they mature in areas they were weak in that coincided with the autism checklists.  She's a big believer in early intervention, but not every kid will stay there.

 

Some cases are more clear-cut of course.

 

 

[Joanne]

{{{hugs}}}

The professional involved sounds thorough and diligent and careful.

[Um_2_4]

 Often, these can be the root of behaviors that can look like those of someone on the spectrum.  My middle son had many issues that you describe and his problem was definitely sensory related.  He was a sensory avoider, had auditory processing problems and an older brother who insisted on speaking for him.  In addition to the expressive language delay, he had major melt-downs every day due to the fact that I cut his toast in squared instead of  triangles or he couldn't stand the shirt with pockets.............................................................neurodevelopmental therapies for his sensory therapies since the school refused to acknowledge any testing that revealed that his problems were sensory related.  We could have gone the OT route, but that would have meant leaving a once a week appointment vs. short activities done at home every day.  He made great progress and the tantrums decreased tremendously after we started neurodevelopmental treatment.

 

Ellen, this sounds like my DS3. His speech is much better now than 6 mos ago, but the meltdowns over little things....oh my. Sometimes I never know what will trigger the next one. With speech it has improved, but not totally.

Can you refer me to any info on doing these neurodevelopmental therapies at home? Google just brought up links for providers.

I have thought it was linked to OCD possibly because his gma and uncle on DHs side have severe OCD and a couple of his aunts on DHs side have less severe OCD. I can also see the sensory thing being part of it, but I'm not sure which way. He avoids some things and seeks other things (touch).

[dirty ethel rackham]

We used National Association for Child Development (NACD.org).  I was a bit skeptical at first, but the results we saw were amazing.  My son went from an angry, irritable little boy to a kid who smiled more than frowned - in the first 6 months.  He was still an intense kid, but the tantrums diminished by 70% during that time.  We were on program for about 3 years, but I think that last year was probably not as necessary. He went from being unable to follow anything more than single-step directions to being able to do multi-step processes. He went from being unable to function in large groups of people to being able to carry on a conversation, follow directions and have fun.  He still avoids large groups unless they are a very orderly group, but I have very few worries about him now.  He is 17 and a very bright kid.  He can still get overwhelmed in new situations, but has learned more acceptable coping measures.  His diet is much more varied.  He can wear most clothing without wanting to tear them off, but he still has very strong preferences. 

[Tiramisu]

I have friends who used a neurodevelopmentalist through Hope and a Future, I think it's called. I was also skeptical when I heard about it, but several friends have seen amazing improvements that have been noticed by others. I may have tried it if I had the money. It's not cheap.

[Um_2_4]

I have friends who used a neurodevelopmentalist through Hope and a Future, I think it's called. I was also skeptical when I heard about it, but several friends have seen amazing improvements that have been noticed by others. I may have tried it if I had the money. It's not cheap.

 

Yikes, yes it is not cheap. DS had a speech delay (runs in DHs family, DD7 was the same and talked without therapy on her own at 3), but after the eval (covered by ins), the therapist gave me things to do at home and he was talking within 2 months and can talk like his sister now (9 months later).

I am really hoping to find some books/website etc to do at home. In addition to the $, getting out to appts for us would be tough.

I will keep googling......