questions for parents of autistic children

[ez]

(I originally posted this on the community board but got no replies. Hope its ok to post here.)
How old was your child when they were diagnosed and who diagnosed them? When did you feel something might be "different" about them? What kind of services have you gotten from your state and what do you feel has been the most beneficial? Thanks in advance to anyone who replies.

[Poohnatic]

My son was diagnosed at 5 1/2. Looking back, we probably noticed things were different when he was a baby, really noticed he wasn't like other kids at about 3 years old.

Florida isn't the greatest on most services, but we'll be entering the USF system soon-that may change. Education for Autism/Aspies in the state of Maryland, where we lived until July of last year, was excellent. However, it was hard to find doctors that would treat asperger's/autism.

Good luck!

Suzanne

[SueM in MN]

(I originally posted this on the community board but got no replies. Hope its ok to post here.)
::yes::
Welcome to disABILITIES. :wave:

[Figment1964]

My son was 7 when he was diagnosed and it was an educational diagnosis through our school. I noticed something wasn't quite right at about age 4 and started to question his pediatrician about it. She agreed with what I was seeing but suggested we wait to see if he outgrew any of the symptoms. (She kicks herself now when she remembers giving me that advice since the earlier the intervention the better.)

At age 5 he was seen by a developmental pediatrician and he never did agree with the autism label. At 7, just after putting him in school (we'd homeschooled but that wasn't going well) I found the symptoms of Asperger's Syndrome on the internet and pretty much "self diagnosed" him. The school testing confirmed what I was already feeling.

He's had occupational therapy, assistance in the classroom, friendship groups through the counselor at school and is on an IEP. He's 12 and in the 7th grade now and doing so much better than I'd anticipated during his 1st year in middle school.

[mbb]

(I originally posted this on the community board but got no replies. Hope its ok to post here.)
How old was your child when they were diagnosed and who diagnosed them? When did you feel something might be "different" about them? What kind of services have you gotten from your state and what do you feel has been the most beneficial? Thanks in advance to anyone who replies.

Welcome:)

Our twins were just turning 3..

We had asked for referrals from our family doctor when they were about 16 months old...and we got the standard "they're twins, they're boys, their language skills are bound to be a little behind"..

But they weren't sitting/crawling well, eating was an issue - no desire to feed themselves...language was realy delayed... we watched Barney/Teletubbies/Disney ENDLESSLY..and they loved to take the phone book everywhere with them.

Yep..the phone book..
18 months old and they could say their letters, recite Disney movies, lots of echolalia, but couldn't ask for anything, other than to tantrum in front of the object they wanted...
I really had to push for a referral to Speech and Language..and the waitlist here - in rural Nova Scotia, Canada - was almost a year. We went to a Diagnostic/Assessment Team shortly after that...OT/SLP/NeuroPaed/EIinterventionist..

Early Intervention was just starting here, and we their first family:) they started in a Special Needs program at a daycare at age 3.5 ...and things just zoomed from there...

They are amazing little guys:)

I'm proud to be their mom.

:sunny:

[Rosie]

My DS now 11, was 7 when he was diagnosed with Asperger Syndrome and Attention Deficit Disorder. I knew from when he was about 2 that he was different in some ways from typically developing children. He has no language delay but by the age of 18 months he was obsessed with letters and numbers to the exclusion of most other things. He has always been very visual and cannot ignore a screen of any kind. He taught himself to read before he was 3, which I didn't really encourage but I didn't stop him either, it just sort of happened. His obsessions changed about every six months, covering Thomas the Tank Engine, Dinosaurs, The Solar System and Marine creatures to name a few! He still has obsessions, currently Runescape and Shakespeare. When he discovered computers we had real problems. We bought a PC when he was about 4 and he wanted to stay on it all day. He is still very attached to the PC!

Food has always been difficult as was potty training. He had problems with sharing and taking turns and found friendships hard work. As he grows up his social skills are improving and he is lucky to have five very good friends who understand him and care for him. We have always been very honest with him about the Autistic Spectrum and where he is considered to be on it. I vary between thinking his diagnosis is accurate and thinking that he is just bright and eccentric, but thats my problem!

As we are in the UK my experiences with Professionals who are involved with my DS is probably not going to be helpful. He has no specific learning difficulties and we don't receive any benefits. He has an Individual Education plan but he is doing really well academically. I always think that help with friendships was the most important thing I could do for him because no matter how well educated you are you need a friend!

I hope you get some helpful replies.
Regards
Rosie

[mikkiwikki]

My son was dxd 2 1/2 with pdd-nos which is on the autism spectrum.

At 16months he knew his alphabet.
Proud momma thinks He's a genius! (and he is)
My son had a symptom called Hyperlexia (opposite of dyslexia) - fascination with symbols - letters & numbers. It was very very obvious if we got around any letters...I remember going to girlfriends house...my son was totally fixated on letters to the exclusion of all else.

By one year he had a few words...BUT Mama wasnt one of those first words.
By two years he was reading ...with no formal teaching from me.
At 2 years he had 70 words and by 2 1/2 he had 350 words.
At 3 years he was putting two words together and had thousands of words.

However - NONE of his language was social. Meaning no 'LOOK' sharing a moment of enjoyment with mom/dad. from a kid that could say ABACUS, alligator, trapezoid...clearly the ability was there.

According to pediatrician his language was not clinically delayed. So he fits into the Asperger's category, but still carries the pdd-nos dx formally.

He got 40 hrs per week ABA, floortime, along with DIR, DRI, from the time he was 2 1/2 which helped him tremendously.

He is now 5yo mainstreamed (with support) and is the first one to finish his worksheets. Academically we are lucky he is very gifted. He now tells us he loves us, and shows empathy and has friends. He is not as social as other typical kids...but there are so many techniques to help these kids today, I now know he is going to be just fine. Something I couldnt say at 2.

Hang in there. These kids are gifts to us.

Great summation at bottom of this website of all the DXs on the spectrum
http://www.pediatricneurology.com/autism.htm

[mikkiwikki]

My DS now 11, was 7 when he was diagnosed with Asperger Syndrome and Attention Deficit Disorder. His obsessions changed about every six months, covering Thomas the Tank Engine, Dinosaurs, The Solar System and Marine creatures to name a few! He still has obsessions, currently Runescape and Shakespeare. When he discovered computers we had real problems. We bought a PC when he was about 4 and he wanted to stay on it all day. He is still very attached to the PC!

Wow - My son has the same likes..Thomas, solar system..marine creatures....spooky! AND we let him use a PC at 3..He was obsessed with letters as well - ! Just read your post! We should chat!

[DisneyDreams4P&B]

We lived in NH and our then 3 year old was diagnosed with a speech delay. I knew something more significantly was wrong but I was "veto'ed" by everyone at his school. His second year into preschool, I asked for the psychologist to look at him, well she basically said he was scitzophrenic. We moved up to Maine and enrolled him in the preschool up there, during the initial meeting after I described his symptoms they asked if he had been tested for autism, they started him off in an autism preschool while waiting for the neauroligst and he was diaganosed as a high functioning autistic. He recieved wonderful treatment there, becoming quite verbal and aware of his surroundings.

We have since moved to Atlanta Georgia and have had nothing but problems. It has only been a month but I am ready to go home.......Where you live can really determine the help you get.

[Jotash]

I knew my son was different very early on, maybe at 18 months or so. He wasn't speaking, lined things up and was gifted in mechanical things (ie, taking things apart and putting them back together.) After much resistance and downright denial from my DH and our pediatrician, I tried to get him to a speech therapist and neurologist myself, but my insurance wouldn't cover it without a referral.

After a year and a half of being told it's because he's an only child, he's a boy, blah, blah, blah, I started him in speech therapy myself and completely out of pocket when he wasn't talking socially at age three. His speech therapist was the first to use the term autism.

I changed pediatricians and she agreed with the speech therapist (they didn't know each other) and referred me to the Dan Marino Center here in South Florida. The neurologist, Dr. Tushman, gave us the official diagnosis of PDD-NOS just after his third birthday and referred us to the school board for evaluations. A year later, after many, many tests, he was put into a program.

He is now five years old, speech is improving slowly, and he is kindergarten. No mainstreaming yet, but we're hopeful that maybe one day. He is a wonderful child. I dream of the day when he can tell me what he did in school or how he is feeling. BTW, my insurance still won't cover any therapy since they only cover physical disabilities and not "mental" ones. How crazy is that?

[LauraAnn630]

My sister is going to Disney with her 10 yr old autistic daughter.

What will Disney do to make there trip easier?

[admepo]

My son was diagnosed at age 4 as having autism. He had been previously diagnosed as having developmental delay with autistic tendencies from the age of 2. We noticed something wasn't quite right at 15 months. He was not seen by specialists until after he was 24 months old. We received all diagnosis for him from 2 different neurologists. Jake is in ESE PreK and receives Speech and OT through the school district here in FL. We are on a waiting list for the Medwaiver that pays for services from APD's Disability Services in FL but the waiting list is YEARS long - average being a 5-7 year wait!
OT has really helped Jake with sensory issues which he has had quite a few as well as fine motor skills and basics in self help like dressing. Jake just started actually making progress in speech this year. Slow but steady. I think he would really benefit from ABA which we are in the process of looking into.

[admepo]

I knew my son was different very early on, maybe at 18 months or so. He wasn't speaking, lined things up and was gifted in mechanical things (ie, taking things apart and putting them back together.) After much resistance and downright denial from my DH and our pediatrician, I tried to get him to a speech therapist and neurologist myself, but my insurance wouldn't cover it without a referral.

After a year and a half of being told it's because he's an only child, he's a boy, blah, blah, blah, I started him in speech therapy myself and completely out of pocket when he wasn't talking socially at age three. His speech therapist was the first to use the term autism.

I changed pediatricians and she agreed with the speech therapist (they didn't know each other) and referred me to the Dan Marino Center here in South Florida. The neurologist, Dr. Tushman, gave us the official diagnosis of PDD-NOS just after his third birthday and referred us to the school board for evaluations. A year later, after many, many tests, he was put into a program.

He is now five years old, speech is improving slowly, and he is kindergarten. No mainstreaming yet, but we're hopeful that maybe one day. He is a wonderful child. I dream of the day when he can tell me what he did in school or how he is feeling. BTW, my insurance still won't cover any therapy since they only cover physical disabilities and not "mental" ones. How crazy is that?

Boy does this all sound quite familiar!! Anything Jake doesn't receive at school we pay for out of pocket since our insurance "excludes coverage for autism" which includes all therapies. We were also told for Jake that he was a boy, blah blah blah...when we saw that at 15months he seemed to lose all of his words. After we moved and got a new pediatrician and I voiced my concerns to him he immediately started the ball rolling with speech evals, OT evals, the EIP program, etc The Dan Marino center finally gave us our official diagnosis of autism just this past summer

[Rosie]

Hi Mikkiwikki

It is quite spooky when you first realise that many aspects of behaviour shown by kids on the Autistic Spectrum is so similar isn't it? I have learned so many interesting facts from my DS - and a few less than fascinating ones!;)

Like you I truly consider my DS to be a gift to our family. I am a very different woman because I have him. It is very difficult at times being the parent of somebody who knows everything about their pet subject but can't work out when to put their coat on!

Your DS and mine sound very similar in interests and abilities. One great thing about my DS is he doesn't react to peer pressure in a typical way. He is now 11 but he doesn't care if other kids call him geeky for being good at maths and science. He is always the first person they ask for help on PC games or Playstation. It is easy to discipline him because he just hates to have "machine time" taken away, so the tantrums and melt downs are less and less frequent and usually related to his fear of something such as food.

I notice you have a trip to WDW in November - is your DS excited? Make sure you take some earplugs my DS found them invaluable when we went in April. Have a great trip!

Regards
Rosie

[karynnix]

We had always noticed that my DS "marched to the beat of his own drum", but never thought it to be anything than his personality. My DH has a younger brother who is severely autistic, and we figured that the traits my DS showed were from watching his uncle and mimicking him. When Jack was 5, DH left for Iraq for 14 months. We (again) assumed that the problems Jack had were reflecting on his dad being gone. Never dreamed that it could be autism. He started 1st grade, and his teacher immediately recommended that we have him tested. I was on November of last year (Jack was 6) that we got the diagnosis of Asperger's, ADHD, and severe OCD. I was actually relieved to know that these temper tantrums and panic attacks were CAUSED by something. Now we knew how to change our way of disciplining him and begin to TREAT the problem. I have read everything that I can get my hands on. There is so much information out there. We just moved cross country and had to start all over with a new school. I didn't think that I would have to fight for programs for Jack, but I have. I am trying very hard to get him a 1:1 aide this year, because he requires so much attention. He is in speech therapy and did a little occupational therapy, but other than that, he does everything that the other students do. It's really hard for him, so last week I talked to them about getting him in the special education program. That will make it a lot easier to get these things that he needs in school. The kids in the class are very helpful to him. Sometimes they want to help TOO much and I have to let them know that he needs to learn to do things on his own. I have been going to school with him everyday for the last few weeks and I will continue to do that until they provide an aide for him. Just let them try to get rid of me!!

[MN Dis Fans]

My DS10 was officially diagnosed at age 6. Like figment1964, I self-daignosed him after reading a Parents magazine article. However we had been seeing a family counselor since he was age 4. (I thought something was wrong with me and went to see a psychologist for depression. She suggested that the one needing help was our child!)
In addition to speech and social skills groups, a developmental eye exam revealed the need for glasses and eye exercises. So we worked for a year with the pediatric opthamologist.
It has all been so worth it! Next month DS will go from receiving services twice weekly to indirect services. Will everything be peaches and cream forever? Probably not. But I am optimistic.

[momtobe98]

It was the day before my sons 2nd birthday that he was diagnosed. Two weeks later I joined the local Autism Society Support group and I was told I was "lucky" to have such an early diagnosis. We had already started Early Intervention and my sons OT told us he might be autistic, which had helped prepare me for the diagnosis. My son was hitting all his milestones until he was about 16 months, then things went downhill from there. He started spinning, lining things up, running his head on the carpet (total sensory needs kid!) We started doing ABA therapy three months later (that was 3 years ago). He was originally diagnosed as moderate to severe autism, but now is at mild to moderate. He has apraxia, as many do, but last year he wasn't speaking at all. In December he started talking. We don't hold conversations, but he can lable just about anything and he says "Mama", my favorite word!!!

We are planning our first family vacation which will be in January to Disney World, and I can't wait! He loves animals, as well as numbers and letters, so we plan on taking him to Animal Kingdom. He has a 7 year old sister and 3 year old brother (he's 5 now) so I'm hoping we will all have a good time. My sister is also coming to help out, so I'm excited.

Good luck to all!

Karen

[HayGan]

My son was 3 1/2 when he was officially diagnosed as PDD-NOS but the words autism spectrum originally were uttered by a speech pathologist when he was 28 months. Starting around 20 months we began to see our normally developing child use fewer and fewer words and then become fascinated with watching himself dance in front of mirrors/blank television screeens. I first brought up my concerns at his 2 year check up but his ped. just brushed it off and wanted to wait another YEAR before he re-evaluated him. Well at 26 months, I pushed for a speech eval. She was the first person to suggest autism. When I called my ped. to get another referral, his comment was "I had my suspicions" WHAT?!?!?!?! Needless to say we found another ped PDQ!!! I have to admit that by that point it wasn't a shock to me to hear autism. I knew that something was different and he was starting to go into his own world. Following the speech eval, I immediately called for an appointment at a local Child Development Unit for an evaluation. I couldn't get an appointment for almost 6 months. In the meantime he recieved EI from the local Infant & Toddler agency. We had speech and developmental therapist come to our home for almost a year until he transitioned to the EI preschool. When he was officially diagnosed at 3 1/2, he became eligible for medical assistance. Once his MA kicked in he started to get wraparound therapy at home through a local agency which specializes in autism. Shortly before he turned 4, he started attending a program for high functioning kids run by the same agency. Today, he recieves speech and OT as well as attending the same program. I have to say that I have been very pleased with services that we have recieved!!! Soemtimes it has been a little bit of a struggle to get things started in a timely manner but I understand as the demand for services has skyrocketed!!!

3 years after we started this whole process, he is doing wonderfully!!! He is very verbal although he still has difficulty with conversational speech (but it is progressing :teeth: ) Communication remains his biggest challenge! At his most recentevaluation (which is done every 4 months) he actually scored very,very well and shows very little signs of autism other than communication skills. He will more than likely always be a little bit on the shy/different side but aren't we all a little quirky? While I wonder what the future will hold for him, we just take everyday at a time and just enjoy the wonderful human being that he is!!!

[JenJen]

When C was younger (he is now 13) He was obsessed with Star wars. I really believe he thought he was a Jedi. He Made really cool sound effect light saber noises. He also thought he was batman for a while. Now all he cares about is Video Games. Lord help us all!!! All he talks about is how he is getting the new X box for Christmas!!!!

[Brightsy]

My older son is 6 and has ADHD. I wasn't in shock about that one because it runs in the family (I was a ritalin kid for 6 1/2 yrs. of my life.) The shock was saved for my second child. He's now 4. He was diagnosed as HF ASD when he was a little over 2 yrs. old. Hindsight being what it is I can recall having a niggling thought about autism as early as when he was 12 months. I'd just read an article about it and some of the "symptoms" kind of struck me. But I talked myseld out of worrying about them until he was 18 months. At his 18month checkup his ped. was pleased w/ many of DSs skills, but worried a little about his verbal stuff. DS had a few words, but not as many as he should have. Still we didn't worry too much, figured it was just his own slower development, after all his older DS tried to do all the talking for the whole family.
So, fast forward 6 months. At his 2 yr. check I told the Dr. that my son had stopped talking all together. He no longer even tried. SO we went to get his hearing tested, that came back normal (as expected) then we were off to the speech pathologist. She looked at him, played with him a little and turned to me and told me there was something more than just a speech delay. I (who already suspected) said the "A" word and she nodded and said that she thought so, but couldn't diagnose it herself. So off we went to the child shrink. About 10 minutes into the initial appt. the Dr. looked me square in the eye and said "Autism." I nodded, by this time I'd read so much about it I'd pretty much figured it out. The Dr. then went over the stuff in the DSM bullet by bullet and made sure I understood it all. Then we took my son to a group study, and got his early intervention started.
When it all started he had less than 10 recognizable words, wouldn't smile mch, pretty much ignored everyone but me. Now he's got over 150 words at least, several sentences that we can understand (sort of). He makes fairly consitent eye contact, is beginning to socialize with other kids. He smiles like crazy, loves Mickey Mouse and anyone in costume, adores Cirque Du Soleil and frequently treats us to little mini-Cirque shows complete w/ singing.
I'm amazed at how far my little guy has come since his diagnosis. And everyday I thank the powers that be that he's in my life.
He and his big brother have made my life so much richer than before. I think that my DH and I wouldn't be half the parents we are had our kids been "normal." Their issues have made us more patient and understanding. In some ways this all has been a gift, an odd one but there ya' go.

Sara (sorry I rambled on so...)

[twojo21]

my brother was diagnosed when he was 2 1/2. my parents noticed differences in him when he was 2 & brought him to the doctor. he was then diagnosed with autism. the service isnt great here, my parents are still waiting back on assistance now that hes 18, but us personally as a family have done everything we can to help him develop further.

[wide awake]

My son was diagnosed at 3 yr, 5 months...he is now 15 yrs old. DS was very sharp...I can remember taking him to a doctor appt at approx 15 months and the doctor remarking on how precocious he was...and it wasn't echolalia. Charles hit all his milestones early, particularly the social ones...then at around 18 months he stopped talking one day. We still had occasional good days, and he'd been far ahead so even though he wasn't progressing he was still at the right spot at his 2 yr check-up. I sensed something was wrong, and the summer he was 3 I took him in...DH is AF and we were being transferred to Iceland...the doctors said DS was fine, not to worry. Five months later we had a diagnostic team from England check DS out, got two diagnoses that day...PDD-NOS and ASD...same thing, different terms from different professionals. The AF sent us back to California, I became involved w/ a strong parent's group and Charles had an ABA program w/ oversight from the Lovaas team within 6 months of diagnoses. After a short time the regional center began paying for the program, and our school district has always paid for whatever I asked for. Right now we're doing biomed stuff...out of pocket...this seems to give the best results ever. Yesterday's Thanksgiving was the best he has had since he was three yrs old...he always sat at the table, had beautiful manners...but yesterday he was into it !!! Had nothing but 2 yogurts for breakfast, than didn't eat till dinner at 4:30...happy and waiting in the living room when our guests arrived...willing to try new foods. Then this morning he wanted to listen to Christmas carols in the family room...the season has kicked in.

[Nik's Mom]

It was a long, bumpy road to get a diagnosis for our 6 year old ds. We were suspicious beginning at 2 years old. He seemed to lose a lot of his vocabulary, didn't show interest in toys, didn't socialize with people, etc. We kept taking him to his pediatrician, and they'd make excuses (he's just a little slow at speech, he is behind because my dh is bilingual :earseek: , etc). We even went to a speech therapist who said nothing is wrong. When ds was 4, I took him to get evaluated by our local school district. They could not confirm autism, but said he definitely was developmentally delayed and had a significant speech delay. He started a special day class with speech therapy at 4 years old. Then we finally found a great pediatric neurologist who confirmed that ds was hf autistic at age 6. So now ds is also getting ocupational therapy. He's improving now that we are getting him the services that he needs. :grouphug: Hugs to all of you who are going through this. It's so hard at times. I'm so glad I have such a suportive group here on the DIS!

[Mishetta]

And I felt so alone in the world! My DS age 4 was dx'd as developmentally delayed & cognitively impaired & also suffered from delayed auditory processing disorder at 2 y/o. At his 12 mo check up I told his Pediatrician that he wasn't saying any words...not even "Mama" or "NO." Ped said "oh, that's because he's got an older brother & you already know what he wants before he has time to ask for it & your family is bilingual....blah, blah, blah. Well at his 18 month check up, same story but when we went for the 2 y/o check up the doctor was quick to hand me a referral to our local school district for testing.

He's been in the school programs offering SLP. OT & PT but we're still struggling. Now he gets really destructive in school & he's been suspended twice. So through a wonderful angel that stopped at my garage sale a couple months ago, I found out about this other program thru the county I live in & as of today I received word that my DS will get SLP & OT at home FOR FREE! He will also have psychiatric services all paid for by my own tax dollars!

As of recent, my DS was dx'd with Asperger's & ADHD. He's in his 2nd year of the Early Childhood Developmental Delay program (ECDD) & he may still qualifiy for an additional year in that & then possibly Begindergarten & then Kindergarten....but only time will tell!

My oldest is 10 & he is ADHD & now is suffering from retrieval problems. He can't remember information. At school, when the teacher asks a question, he'll raise his hand to give the answer but when she calls on him, he forgets it & can't answer but at home he knows the work inside out! He's also showing expressive speech problems. Oh...I'm just so tired! Unless you're living through it yourself, you can't imagine what our lives are like!

God Bless us all!