How easy was it to get your child diagnosed with autism? Please share your story at our discussion blog!

How easy was it to get your child diagnosed with autism?

How easy was it to get your child diagnosed with autism?

I think at the outset I should mention that I’m not neutral on the subject of the diagnosis of autism i a young child.  On 1st of September 2009 (yes I can remember without looking it up) my now six year old son was diagnosed with Autistic Spectrum Disorder or ASD.

The process of getting our son diagnosed took around six (rather traumatic) months.  The reason it was so fast was two-fold.  One was that a diagnosis would provide our son with access to vitally needed interventions as early as possible.  The second was that the London based service providing the diagnosis felt we would accept it.

As I run a Facebook Page called AutismTalk (https://www.facebook.com/AutismTalk) I realise that there is no one” best way” to get and accept an autism diagnosis.  On the AutismTalk  page there are a wide variety of different reactions to an autism diagnosis.  It is this that I want to explore on today’s blog.

In March of 2009 we were informed by our son’s nursery that they though he had a sharp delay in speech development as well as raising concerns over his gross and fine motor skills.  (No he had not been potty trained by that stage).

Once referred to an “Early Years Centre” in South London our case worker was blunt about telling us that speech delay was highly indicative of autism and that early intervention was vital.    Brilliantly, for all of us, she suggested we move him from his old nursery to a band new specialist autism nursery based in a local primary school.  He started there even before receiving his diagnosis.  The team in this nursery (or Resource Base as it is sometimes referred to) included Occupation Therapists, Speech and Language Therapists as well as conventional teachers.  Its objective was, and is, to enable autistic children to enter mainstream schooling.  This our son achieved.  Though the story of his misadventures in mainstream schooling is perhaps for another post!

I would like to pay tribute to the support of all those professionals who helped our son so much.  By seeming him develop, though sometimes, ever so slowly was the way I came to terms with my sons diagnosis.  While tough I realised there was future with a full life for him rather than the long night of pain I’d expected when I first heard the term autism in relation to our son.

So what is the point of this blog?  Apart from, I suppose, the eternal struggle to get ones “thoughts in order”.  Really I’d just like to ignite a conversation with fellow parents and carers of autistic people about both the process of diagnosis and how they came to terms with that diagnosis.  I’d love it if you could use the comments box below to share your thoughts.  You might like to think about some of the following questions?

a)      What actually was your child’s diagnosis?  At what age were they diagnosed?

b)      What process did your child go through to get diagnosed and how long did it take?

c)      How did you react to the diagnosis?  How did your feelings change over time?

d)      And finally what words of advice would you give to somebody who has just been warned that their child may have autism?

Thanks very much in advance.

PS  I did cry on receiving the diagnosis by the way.  Didn’t you?

37 comments
RhiannonHopkins
RhiannonHopkins

My son was not diagnosed till he was 38 years old.  I took him to a child psychiatrist when he was little, on a doctor's recommendation, because he was not coping at all well with school, was reclusive and way of out of synch with all of his peers. This was in the early eighties, no one mentioned autism. He made it through school, which is far more down to me than any teacher he had except one, the only one to see that my socially awkward, often uncommunicative boy was actually very bright and could do a hell of a lot more than you thought he could if only you took the time and communicated with him in ways he could respond to,  As an adult he sought help and still no one mentioned autism  - he got diagnosis of dyspraxia, possible everything from bipolar to schizoid, even when he was in a supported living situation not one  of the support workers or social workers suggested autism.  Once again, it was down to me that it was recognised. I read an interview with an actor, whose name I don't now recall, who is autistic.  He was talking about how his condition affects him both professionally and privately,  It was like a light coming on! I understood my son for the first time in his life, so much about him made sense, particularly the wide gap between his obviously high intelligence and his inability to cope with life as it is lived.  I pointed the article out to him and because he is an adult had to leave it to him to follow up.  Eventually, he did and was diagnosed as high functioning autistic.  It didn't surprise me though there was a momentary adjustment to the news, but my son is my son, beloved no matter what.  Son himself has taken things very much in his stride - he was never one for emotional fanfares - but I have seen how it has changed him for the better.  He faces the world with a greater confidence, I think being able to explain himself to himself is the thing that helps him most, knowing why he struggles with things other people find easy.  He is a strong character, who refuses to let his autism stop him from trying new things, even when those things scare him. And sometimes he does meet with the un-kindness of strangers - he is planning to get himself a t-shirt printed with the words, "I'm Autistic.  How can I help you?"  

bookbama
bookbama

my daughter was diagnosed at age 10 in 2000... and that all came about mostly by accident.  there were plenty of signs prior to that... sensory issues... processing skills... anxiety... meltdowns... but asperger's was not well known at the time.  i just thought she was quirky and we ended up adjusting to those quirks... she could only wear certain clothes and none of them could have loose "strings".  the tub had to be filled before she went into the bathroom 'cause the running water was too loud. we couldn't flush toilets in her presence... too loud.  no vacuuming in her presence... too loud.  restaurants... too loud.  when the sun was too bright, she wanted me to turn it off.  she would become obsessed with something and talk about it non-stop... repeating herself often.  (she still does that but will contain herself, with a giggle, when i do the hand signal that she's talking too much.)  she was very limited in what she would eat.  i could tell when she was anxious 'cause she would crawl in my lap and start rubbing little circles on my arm.  not to mention all those meltdowns for no apparent reason.  during a routine doctor visit, the doc mentioned that she might be OCD... so we went to a psychologist... who determined she was not.  but prior to that visit, a friend had sent me an article about asperger's... ding-ding-ding... fit her to a T.  i asked the psychologist about it, but he was not familiar with asperger's and referred me to another psychologist... who seemed intent on diagnosing her with ADD/ADHD and kept pushing ritalin at the two visits we tolerated before moving on.  in the meantime, i researched asperger's... not a lot out there at the time, but i found a few books and a blog or two... and contacted the emory autism resource center in atlanta.  one visit and we had the diagnosis.  because of the diagnosis, she received more services at school... and the schools were awesome in that regard.  my reaction to the diagnosis... relief.  there was a reason for her quirkiness... and things we could do to help her along.  she graduated from high school... spent 6 months at a vocational rehabilitation center 45 miles from home... first time away from home so she hated it... until she loved it.  she worked in a sheltered workshop for about 3 years after that and loved it... until new management came along and pretty much ruined the environment.  she's not working now, but she is thriving... has a nice group of friends that "get" her and is doing very well.  she is a delight.  my advice... patience and perseverance.

liavek
liavek

Diagnosed at age 4 after his preschool principal expressed concerns about socialization challenges at primary school.  Preliminary assessment from his cousin's speech therapist the next week (his cousin was diagnosed 4 years earlier at age 3), then 5 months to get his formal PDD-NOS diagnosis from one of only three Developmental Paediatiricians in the entire country (1.3M population).  Wasn't a shock to me, not because I expected it (PS, no-one did, although the whole family had been watching him like hawks for years), but because I had been on the fringes dealing with this with family, friends and colleagues for almost 25 years.  The diagnostic process was fast because of my heightened awareness over the years, I just knew either where to go, or whom to ask for directions.  Not much crying was done then or since, I don't have time. 


Advice for parents of Autistics?  

***It's not the end of the world, but do your crying quickly and in private, never in front of your child.

***Find your network and support system - online or IRL - and cling to them like glue.  They will get you through the tough times.

***Do NOT expect family and friends to rally 'round.  If they do, great, fantastic, but don't blame them if they don't.  BUT, and it's a big "but", don't cut them any slack either.  

***Your first responsibility is to your child, your first priorities are your child, their siblings and your co-parenting partner. Everything and everyone else is on page 2 of your to-do list.  If that means that you have to protect/shield your nuclear family from the extended family (and yes, I also mean the grandparents) then you do that.  It's hard, it sucks, it'll hurt, folks will get mad at you but it's your child's happiness first.

Ariesashleylynn
Ariesashleylynn

My son was diagnosed at 18 months old. I notice a difference from the time he was 6 months old but I couldn't put a finger on it. He was delayed and his twin sister was reaching all of her milestones. My oldest was in head start and they had sibling screening day. I brought my twins it was around 11 months old. I got the results in the mail AFTER his 12 month appt. at his 12 month appt I told his doctor about my concerns. She said not to worry he's a twin and a boy it's to be expected. He's my first boy I have two older girls 5 years and 3 years old as well as his twin sister. I knew something was off. She said if it would make me feel better she could get in contact with CDS for them to come out and do a screening. I agreed. I got the results from the screening from head start and it showed he was really delayed. CDS got in contact with me (same people from the school) the same person that did his first screening was there as well as 2 other ladies. They did the screening to see if he would get into their program to work on his delays. I told them I was worried about him they told me they could do a screening for autism as well. I agreed. I got the results back weeks Later he was accepted into their program and the screening showed he was high risk for autism. CDS set up everything up with a psychologist. We had 4 visits with the psychologist. The 3rd appt he just turned 18 months and he got the diagnosis of autism. I had so many tears not because I was disappointed but because I was told by so many people everything I thought was off was all in my head. I just knew from the time he was 6 months old something wasn't right. I had 2 older girls and his twin sister was advance and he wasn't making his milestones as fast. He's now 22 months old and has come along ways in the last 6 months. He's in therapy 4 days a week 3 hrs a day. It's not the end of the world. He has taught me so much in this short road and we have a very long road ahead of us... I'm so proud and so thankful he is my son. I wouldn't chance a thing about him. He's perfect in every way and he such a seeet bright baby boy!! His laugh brings so much joy to everyone who hears it!! He's my seeet boy❤

MicheleRamirez
MicheleRamirez

My son will be 6yrs old in a couple of days and he was diagnosed with autism & adhd a yr ago. He started preschool at 4yrs old and it was horrible. They called me everyday at work to tell me my son wasn't listing, he was distracting the class, he wasn't eating, ect, ect, ect. It was so overwhelming and stressful. We finally made an Appt with our regular pediatrician and she referred us to a psychiatrist which diagnosed my son. In my heart I knew there was something different about my son due to him not playing with other children, his meltdowns, no eye contact and his speech delays but the diagnosis did break my heart and I cried for days because I was scared for him. A few days later I realized that I had to get over my fears and start the process to get my son all the help he needed. He is now in special needs kindergarten with an IEP and he also receives speech therapy and he is doing better in school! He is on medication (due to not sleeping & adhd) He is a very intelligent, funny and caring little individual and I can never picture my life without him. He surprises me everyday and brings so much joy to my life.

However, i am still a little concerned because he doesn't have a consistent psychiatrist, he's had 3 this yr and I know that the spectrum has many levels but I am starting to notice that my son is doing new different things and I think it's OCD. Now being that the only person we have seen and diagnosed my son was the psychiatrist, is there any tests or any advise that you guys can give me??

greenster32
greenster32

Hi, my son got hisd diagnosis early when he was 3.  I knew something wasnt right from an early age,, he didnt make eye contact, didnt seem interested in people, and was behind in his development.  After his 2 year health check with the health visitor I voiced my concerns, she referred him and it took about a year in total to get his diagnosis that he was on the autistic spectrum.  He was sent for an assesment at john radcliffe hospital and had a variety of tests for them to confirm this.  i was relieved at the diagnosis as it proved i wasnt going mad and it was all in my head that something wasnt right. then i went for a total grieving process for harry and worrying what this would mean for him.  Then I decided to embrace and read up on it as much as i could and educate myself on it.  harry is getting extra support under the autisim project and recieving lots of help with visuals and speech therapy.  He is now 4 and coming along really well.  I am still concerned for him about what difficulties he may face, but am feeling much more postive as there is much more help out there.  My words of advice would be to educate yourself on autism as much as possible, create lots of visual cards and picture social stories to help your child in stressful situations and accept that your child may not be able to do some things but is capable of achieving many things and foucus on those positives rather than the negatives.

p.s  yes, i cried too!

parents_connect
parents_connect

And because of what my son and me went through I did a page to connect with other parents

To all the PARENTS out there that have Special Needs or autism children please,

L I K E & S H A R E this page. It was created by me I hope I'm doing a really good job at it. If you want to have a good old rant or just advice https://m.facebook.com/pages/Parents-connect/680702765373676

parents_connect
parents_connect

My nine-year-old son was diagnosed with autism a year and six months ago. But before he was diagnosed I knew there was some kind of autism. I would get called over to the school many times throughout the day I would tell them how to approach the situation and they would never stick to it I also print off papers about autism and take it into his school and they would tell me not to self diagnose and when He gets diagnosed something they would help him. So on 27 February we went to the clinic to undergo a two hour assessment but my son could not handle it he only managed to do 10 minutes and then he was finally diagnosed with autism I cried because the school made me feel like I was going mad and then the school said that they could no longer reach his needs they never stuck to what we agreed only one person to approach him and give him Space to cool down in March they sent his one to one on autism course the next day He's one-to-one look really relaxed and knew what he had to do he told me that they said 10 minutes work and 10 minutes play and if he needs more plate to give it but when I had a meeting they Tolmie five minutes work three minutes play if he doesn't do any work he doesn't get the free minutes play so In March this year he was permanently excluded from school I was going to do a discrimination case against them but because of the new law I couldn't I have been looking for A solicitor to know Sue the school for Fallon my sons education because we have tried nine schools two of them are mainstream. With an ASD bass and all have come back saying they can't reach his needs and my son has been statement it and when I got him statement it I was told a statement to children always get the free first schools that they put down but once again they are fouling that too when I phone round solicitors they are asking for £170 or 180 an hour I gave up my job last year to be a carer to my son there is no Legal aid to help with this all I want is justice for my son all his old school sees him as a naughty little boy anyone sees this please can you help

Thank you for taking your time to ruthless I'm fighting the fight for my son because he has no one else

MelanieJeanHoyle
MelanieJeanHoyle

I'm still not diagnosed for it and I'm now 36 close to 37 years old.  The signs were there since early childhood, but I was evasive and wasn't as extreme as Rainman, although I did have my moments.  Nobody could work me out and by high school I was just ignored.  Now everything's come out of the woodwork and I realised what was wrong and questioned how nobody could've noticed.  Getting diagnosed as an adult though is extremely difficult, my last check in was with a nurse just over a week ago and despite having brought the subject up many times to different doctors at the same clinic they think I "don't look autistic."  Every time I try to confront them they cut me off halfway and send me back home often empty handed.  I don't know why they don't want to listen or believe me, probably because I'm female and not high functioning and don't meet their expectations of someone with autism, but if they saw me at home for a day they would think differently.  I know I'm not right in the head and think and behave different to everyone else.  I did a few online tests for autism to see if perhaps it was just in my head and that I was just being paranoid but all the results showed the same thing, they all show me as being low on the spectrum but high enough to be likely autistic, especially since it's in my family.

MariaRobertson
MariaRobertson

I knew there wasnt something right , or thats how i saw it right from 6m .I kept thinking this isnt average behaviour for his age but i spoke to other mums and they just told me to keep encouraging him to playing on the floor ,espeacially and toddler groups. When he started pre-school ( 2 1/2) he screamed and cried and clung to me when i dropped him off and i spoke to the pre-school workers and they said he'll out grow it . Well then when he was 6 and still not adapting to go into school enviroment and they're telling me they never see him interact with his peers or if he does he doesnt do it well i thought i need to get to the bottom of it. Well they told me to go to my doc if i want a referral , well put it this way he was finally diagnosed with ASD aged 8 due to waiting lists and others such as the fact that hes high functioning meant they didd'nt see an issue as such. 

RoxyBlake
RoxyBlake

My sons journey began at 18m when I was very concerned about the delay in his speech he didn't even babble at this time. Yes I regret not getting him looked at much much sooner.

So we went for hearing tests right away 5 of them, at 2.7y he finally had tubes put in his ears.

Meanwhile at 2.2y he was seen by a peds doctor because I suspected Autism, she said no and just said he had a developmental delay of about 4m that he was very methodical and showed OCD tendencies. I didn't dismiss the autism to many red flags I thought.

At 2.4y he was seen by a SLP for an assessment where we were told comprehension/ expressive delay and socio pragmatic skills delay.

At 2.8y he had a 4m check with an SLP and an OT where they thought maybe he had apraxia. So he finally started speech therapy at 3.3y once a week and is still waiting for OT.

At 3.8y I had him seen by another peds doc for apraxia, outcome was no she doesn't believe in apraxia and gave him an autism diagnosis just wasn't sure where on the spectrum so we have been waiting for an appt with a developmental peds doc to find out where on the spectrum he is. At 3.11y he had a recheck up with the peds doc now she says no to autism but isn't totally sure, so now I'm still waiting for an apt with the dev. Peds. Doc to see if he's on the spectrum or not and to find out what is "issue" is.

So it's been an in going different diagnosis for about 2.5y

In my heart I believe he is on the spectrum and I'm 10000% ok with that.

KimberlyCahill
KimberlyCahill

My daughter was diagnosed with EVERYTHING but autism until she was 19. She had seen all kinds of specialists over the years. No diagnosis explained in total my child. A friend had said to take her to a new Psychiatrist for testing and an Neurologist. She was then diagnosed with Aspergers or high functioning autism....I guess I can take my pick :) . I was sooooo relieved after that long to finally know what it was we were dealing with. It's actually a blessing to know so we can deal with it correctly and she is happy knowing also. All I can say is KEEP trying to find a good DR. to listen and test. Remember you love your child even when they melt down....they don't do it to make you angry!!! My girl is 25 now and does really well if things stay the same....routine, routine, routine :)

Notjustamum
Notjustamum

My son was diagnosed with several things as a baby, our main concern was his severe seizures, due to getting this under control as a baby/toddler/child we just coped with his other 'habits' and when he went to a special needs school at 13yrs old, they often spoke of his aspergers.... We still have NO diagnoses of this as on reviewing his paediatric notes the doctor explianed we had never raised it as a concern, so they wouldn't diagnose him, he is now 25yrs and still hasn't been diagnosed.

amydawn
amydawn

My son was diagnosed medically without any formal testing by his Psychiatrist as having Aspergers, sadly my son was given that diagnoses at the end of 8th grade, and then we were left just flapping in the wind with no knowledge not even sure where to look for help, well a few years later which was actually Feb of last year my daughter was formally tested at our Childrens Hospital Child Development and Resource Center and given a diagnoses of Aspergers as well, but we were given suggestions and told we should see if we can get in with Autism Clinic there at the hospital and contact Developmental Disabilities Services, we called, they first did all the paperwork for my daughter and she didn't qualify cuz of her adaptive skills score, but I had them start the paperwork for my son, well they had all kinds of testing and reports from school and etc but sent us to their Psychologist for formal testing for him and he said yes he has Aspergers, well my son qualified and received a case manager, I got a referral to the Autism Clinic for him and he was on the waitlist 18 months,he is now 17 and had his initial appointment there in Dec of 2013,he has his FULL AUTISM TEAM followup on April 15th for an 8 1/2 hour appointment, so to sum it up, he'll be 18 in Oct and basically got a formal diagnoses a year ago.

ChrisandShae
ChrisandShae

My son is diagnosed with Pervasive Developmental Disorder Not Otherwise Specified. I am told it is an ASD, and is diagnosed with a severe case. He was diagnosed by age 71/2 but could not get him treated until age 11 1/2. I have an adult daughter who has a son with Asperger's, who also has Muscular Dystrophy. I was upset after the diagnosis, and she informed me that a diagnosis doesn't change anything. He is the same as before the diagnosis, and will be the same after, so all we received is confirmation of what we already knew and the benefit of a diagnosis is to get him the help he needs. It was a good thing to hear, and she was right. 

irlam7
irlam7

Watching casualty tonight and they tell parents that there son might be on the autistic spectrum and they break down. From my experience of having a child on this spectrum, I must say through all the ups and downs of my experience with my boy it's been a pleasure. I have a daughter who is on the doesn't do what she's told and knows better than anyone spectrum and wouldn't swap any of them for the world. I would like to say I am a proud father of a boy with aspergers.

RosieMarie
RosieMarie

My son was diagnosed at age 8.  I had been trying to get him evaluated since he was 2.  The doctors said that he was so high functioning that the things I noticed were just quirks that he would outgrow.  In June 2013 at age 8, he was finally diagnosed with very  High Functioning Autism similar to Aspergers.  He was also diagnosed with sensory processing disorder.  These symptoms were my biggest concern when I went to the doctor with my journal.  The sensory issues were the worst because they were a problem with daily living.  The doctor said that sensory issues rarely shows up without a main issue.  Suddenly, I said, "Yeah, he is autistic."  I had to explain why I thought he was autistic but by the time I was finished, the doctor was ready to recommend him for a full evaluation.    


When I got the results, I was not surprised.  In fact, I told the psychologist what it was before she got a chance to tell me.  She said, "Well, we can agree then that he is very High Functioning Autistic with sensory processing issues.  Oh but, in addition, he might have ADHD. I am not sure because I only found one symptom of ADHD  and it is where the ADHD spectrum and autism spectrum cross.  It could be part of the autism.  I am going to diagnose ADHD just in case more symptoms present themselves later."  I did not cry.  I was happy to finally have definitive proof of why my child acted the way he did.  I was so tired of people looking at him weird and making rude comments when he would react to sensory stimulants.  


Now that I know there is a reason for it, I can deal with it and take opportunity to teach others about autism.  I don't see autism as something being wrong with him.  He  is just different and there is nothing wrong with that.  I did not cry because I see this as an opportunity for him ...  and for me.  He has the opportunity to teach people how to treat him. He can use his special talents as an autistic child to accomplish many things.  He has such a great mind for details.  He can gather details from many things happening simultaneously.  He can then relate these things back in detail.  He has a memory like none I have ever seen.  He remembers things (in detail) from at least as far back when I adopted him (13 months).  His short term memory needs work but he can recall it later. These are just a couple of his wonderful traits.

CelineBrito
CelineBrito

My child was 15months old when my family and I noticed that their was something different with my baby. At that time I was a single mother of two and had not much experience of parent hood. The first few signs we notice was lack of eye contact and would rock himself back and forth and head banging. The first thing that came to me was is he sick , so the mother I am I take his to see his PCP and explained to her whats going on she said she was going to refer me to a develomental pediatrician and that took about 5 months. So at this time I was unawear of what was going on with my baby.. so time came by and his appt. Was here and my stomach was turning upside down and my nerves were at the edge, the DMP. asked her questions and saw doctor reviews and started her evel and as soon as she was done called me back into the room, and said we are diagnosising him with autism and intellectual disability and when I heard that my heart dropped and tears started running down my face. I asked was it my fault did I fail be a single mom was it something I did in my pregnancy. I had a bunch of questions to as in very little time. My baby is 5 years old now his fist language was sign language and now can say a three to four word phase has a bit but limited eye contact no head banging but head hitting and receive the help he needs. So granted I have a 6yr old, a 5yr old and a 3yr old in his terrible 3's and still a single mom I gotta say my gifted baby has touch our heart in was I ever thought of.......

CelineBrito
CelineBrito

When others say anything else I look at them and correct them because us as parents " WE ARE THEIR VOICES" :) best wishes and high hopes to you mommy and your gifted baby.....@ rosiemarie

PatriciaValiente
PatriciaValiente

Iwas working locally for the first time after many years, ironically in childcare. I was the assistant director and brought my younguest child with me. I kept hearing him cry through out the day, so I kept checking on him (one of the perks of working in childcare I thought) But my boss nor the teacher liked me checking on my son everytime he had a melt down. I thought he was having a hard time transitioning from being my spoiled little boy to one more child in a classroom. I noticed that my son was always by himself, and didn't want to play with other children. I thought this was strange because at home my son would play with his brothers and sisters?

All of this came to an end when one day I heard my son screaming and I ran to his rescue to find that a teacher was physically removing him from a classroom in which he was found looking and trying to pick the little crabs. I was beyond upset to see this teacher go out of her way to leave her 15 plus kids just to remove my child being that I (his mother was there) and not only that, but she had taken the liberty of physically picking him up by his arms none the less as he was moving trying to get untangled from her to go back and see the crabs. I quit that day. My boss called me not too happy and as I was trying to explain in a tone to hurt me she said: yeah well, we think your son is autistic! I paused.....


You might think I would have taken this lightly but I didn't. I wanted to make sure, I wanted to be certain. With no resources of my own, I went through our local country to get him tested, etc... But unfortunately I couldn't make the apptment so I asked my husband to take my son. They asked my husband if my son was completely potty trained, if he could tie his shoes, etc.. to which my husband answered yes, I think so! But the truth is, as long as  my husband and I have been married I have raised my kids, and my husband works. Taking what he had said earlier and I guess the tests they gave him, they came to the conclusion that there was nothing wrong with him.


Move forward to my sons ffirst yesar of school, Kindergarten. After a while, the teacher referred him to get tested. this took about 8 months, two months shy of finishing kindergarten I was at the school, sitting down with professionals who had administered tests: speech, psychological etc.. and that is when I was told my son had ASD. It was as though someone had punched me in the stomach and the air had left my body, and while my locgical mind kept thinking FOCUS! my eyes were watering to the point that tears were coming down my cheeks.


I think the workst part iof ASD for me is the NOT KNOWING, NOT HAVING CLEAR ANSWERS. Because there is so much that is UNKNOWN. There are very few local resources, and these are floded! You pretty much follow their schedule or you get NOTHING!. Unless you have money and can afford private care, which is NOT our situation. I feel blessed because my son is alive, and he is pretty special and unique. I would hope that his future would be as bright as it can and more. But a mothers heart is a worried heart, and so, I worry.

purplefroggy20
purplefroggy20

My son was diagnosed with autistic disorder at 18 months old. It was his second visit to the developmental pediatrician and they were quite certain of it. I was worried at 10 months old when he was admitted to early intervention for being so far behind. His pediatrician was worried at 12 months when he failed the mchat horribly. It took about 10 months from my first concern to the doctor diagnosing him. I was ok with the diagnosis. I felt that it was the key we needed to get him the specialized therapy he needed. I am so grateful for his early diagnosis. The aba he received as a result of the diagnosis was the difference. My baby at 18 months old had no words, very few random sounds but mostly just silent. Did not know that I was mommy or my husband was daddy, no eye contact, had stopped eating due to sensory issues and was diagnosed with failure to thrive at 20 months old, couldn't walk outside with out shoes, putting him in a bath tub was like putting a cat in water, he couldn't play with toys...would just pace back and forth in the house. Now he is about to turn 4. His eye contact is about 50% he has a ton of words but still can't request anything, only comment one or two words, he eat about 15 different foods, is a healthy weight, knows his colors, numbers abcs can spell his name. We are still working on being social, controlling the melt downs, communicating but I swear with out the early diagnosis our life could be drastically different. I would rather a doctor tell me that my child never really had autism and they are fine now and make that mistake then i would like to think that my child lost such a precious opportunity to try to change the course of the autism. My biggest advice is if you think something is wrong then push til you have an answer. No one else will fight for your child but you. You need to be your child's advocate and who cares if you are wrong. This is one of those things people wish they are wrong about.

PatriciaValiente
PatriciaValiente

@purplefroggy20 I salute you for being so strong, I found out when he was three, but didn't become "official" until he was 5. Funny part about that was, that even though I already knew, when I was told the news per say I.. was not prepared to say the least! It felt, like someone had punched me hard in the stomach and I had no air. Logically my head kept saying to me FOCUS!  but, my eyes watered to the point, my tears were falling down my face. I am struggling to find resources that fit our life style locally, but I don't give up. I must confess, I think to a certain level I am still in denial, but I know he is autistic. I know, that sounds crazy.. but is my reality. I think, what scares me the most, is trying to foresee a FUTURE for him. As it is our present is so sad. NOT FOR US! no! but is so sad to see how people no longer has patience for children in general, never mind the autistic children. I pray for my son, and I try not to think too deep, because as much as I hate to admit it, it BREAKS ME.

Is nice to read other stories from other parents that seemingly have gone down the same road one has. Thank you for sharing.

HeatherOstler
HeatherOstler

Our boy has only just been diagnosed, he was four at the time (had his fifth birthday last week).  His official diagnosis is moderate Autistic disorder.

Early last year teachers at preschool recommended he see a Paediatrician, who referred us to a specialist clinic for formal assessment.  This assessment was completed but the specialist didn't complete a report and refused to return phone calls or emails, so after waiting several months we changed to a different paed.

The new Dr was fantastic and had him in to see a psychologist for the formal assessment within the month and we had our report and diagnosis just after Christmas. So all up, including all the stuffing around, it took us just under twelve months.  If we go from the time we saw the new Dr. it took three months.


I cried on the drive home from the very first paediatric appointment, but on hearing the actual diagnosis, I mostly felt relief and validation that our concerns were real and I wasn't a "Bad Mother".  I had quite a few months to research Autism and prepare myself for a diagnosis so I wasn't at all shocked or upset.  As our diagnosis is still very new my feelings are still pretty much the same - major relief that we can now start to help our little boy and move forward.


If you have been warned your child may have autism, firstly don't ignore it, it may not be "just a boy thing". Secondly, be prepared to fight tooth and nail for your child - you are their voice and advocate.  Finally educate yourself as much as you can about the disorder, read, research, find support groups on facebook or in the local community and talk to other Autism parents. (I also strongly agree with DaniDe in that you really need to take good care of yourself.)

HeatherOstler
HeatherOstler

Oh... and dont forget that your beautiful little person is still the same beautiful little person.  A diagnosis will never change that.  :)

RosieMarie
RosieMarie

@HeatherOstler  It is not always a bad thing when you find out.  For instance, before people would say such horrible things when he would cover his ears and scream "STOP" to certain sounds.  Now, they are more understanding.   

DaniDe
DaniDe

a)      What actually was your child’s diagnosis?  At what age were they diagnosed?

b)      What process did your child go through to get diagnosed and how long did it take?

c)       How did you react to the diagnosis?  How did your feelings change over time?

d)      And finally what words of advice would you give to somebody who has just been warned that their child may have autism?

My son was diagnosed with an education diagnosis with developmental Delay 11/2006  and formally Autism by a developmental pediatrician Dec.11,2007. He was 4 yrs old. I knew something was wrong when he was two but I was told kids grow on their own levels even by his pediatrician and being a young mom (21) I listened. So it took him almost being kicked out of daycare due to his tantrums & behaviors that they suggested I take him to be tested at a early childhood center and that's when he was diagnosed with a developmental delay and Autism was brought up but I had to wait over a yr for his Autism diagnosis. He did however begin a new school w/ an I.E.P. which was a whole new world & life for us. I didn't react to the official diagnosis for a couple yrs. I knew he had Autism and I wasn't in denial, I just did whatever they told me to do, saw who they told me to see and went with the flow. I didn't grieve until he was around 6 when I began to feel like my life was falling apart. I'm 24, my 6 yr old is having all these issues I didn't understand fully, I had to go to various doctors & therapists and trying to obtain my bachelors was a lot to deal with on my own. Over time, I'm still going to multiple doctors, I'm an I.E.P. queen, lol, I've got him into a special needs school & he is doing awesome there. We struggle a lot but overall he is doing soooo much better. I'm a research queen and I love sharing the local resources I find to help other parents obtain the respite care, activities, events, & camps that either my son utilizes & even resources my son doesn't use because he can't.

Words of Advice: Don't let it eat you alive, don't allow yourself to get lost in Autism. It's so easy to get caught up in everything Autism and forget that Autism is a disorder not your child, it's part of him not who he is. Don't lose you in the process cause trust me, it's easy to. You have to take care of your mental health as well or you won't be good/ useful to help your child. Autism is not the end all be all and you will be successful.

feel free to contact me:

https://www.facebook.com/STLAutismResources

markusderek
markusderek

My son is 3years old now.. and still hoping that he is just late in speaking.. my husband always telling me not to be worry all the time because he see me so much worried.. i just really hope that he is not autism because everytime i think of it.. i just feel so weak aside from i had experience difficulties when im pregnant due to placenta previa im still not sure if i will have another child.. all we do is pray.. hoping that he wont give this situation if we can not handle it. Especially here in our place life is difficult theraphist and schools for autism is very expensive if you are not rich all you can do is pray.. i also feel guilty im thinking its because ill let my child grows watching tv all the time when i have to work and he accidentaly bite his toungue had 5laceration.when he is 1year old because i have to do something because of working. I hope there will be a free school or atleast cheaper fee for occupational and speech theraphist for autism.here in philippines. Im sorry if i cant explain my self clearly because im not good in english . For all moms who have same situations lets all pray that we can surpass all the trials and gain more strenght for our child.

MelindaMathisHughes
MelindaMathisHughes

My son was diagnosed mod/severe on the spectrum with severe language delays about 5 years ago. He is almost 9 now. The easy part was getting him diagnosed. Everything that has come after has been a bit overwhelming. Getting him placed in public school after homeschooling for 4 years has taken just over a year now, but we are now on the eve of his first day. I just hope that I will be able to let him go :^\

VictoriaChristo
VictoriaChristo

My son was diagnosed age 6. He hit all developmental milestones apart from speaking. We were referred to SLT when he was 18 months old. And it was the SLT who referred us to the Social and Communication Clinic to see a paediatrician. My son was now 4. The paed mentioned autism but said she wanted to see him again before saying for def. this was the hardest time for me. I read up lots and could see things that pointed towards him being ASD and lots that didn't seem to match up. We saw the paed two more times at yearly intervals, so he was diagnosed age 6. I felt like a weight had been lifted and we could start living our lives again. The more I read about ASD the more I realise each person living with ASD is unique and while some things are common, the best thing for us is just to focus on what works for us. They said the reason it took so long to diagnose is that my sons communication is at a higher level than his learning (he has learning difficulties too). While we were waiting for diagnosis though we were able to access services SLT, OT and CAMHS.

I would say to someone just getting diagnosis, embrace your child and work with them to see what works best.

I cried when Autism was first mentioned and again when we got diagnosis, not so much anymore.

Leehela
Leehela

My son was diagnosed 2 days ago. Since he was born i noticed something was different.. He liked to be held when asleep  but  when he was awake he wanted to ether be in his bouncer or on the floor by the tv . When he got older he would watch balls roll, wheel spin  but not really play with  them. Then he would line boxes on the counter and  pace  by them  staring at them to make sure that they were to his liking  Then the fits started to happen for no reasons. He would throw himself down , hit his head  or jump around screaming and flapping his hands . Before  age one  the doctor told me not to worry that boys were slow..  Almost age 2 was when he started to walk  and the doctor still told me that he was a normal lazy boy .. I pushed the issue everytime i saw his doctor and finally he told me about TEIS  and  when they came to see him they recommended him to get tested for Autism . At first  even my family was telling me i worry to much  and over think things.. I started to wonder if i had became the dreaded worrying mother that freaks out over every small thing .. I thought maybe  him being odd was all in my mind. After waited for so long  we got on the list and still had to wait 3 months  for the test but   2 days ago  we went  and he was indeed diagnosed with Autism.. I knew it  but  still it was a shock.. I cant help but blame myself. All these guilty thoughts run through my mind.. I exercised while pregnant , i had the flu  when he was  in his last trimester ...  when he was age  6 months he had fallen off the bed once..  he was 3  weeks premature..  im a very shy  girl   was once held back in kindergarten  because i wouldnt talk to people  and i was labeled with a learning disability  .. was it my genetics ?? i should have  spent more time.. when he was born i had   a one year old already   and now i have a 6 month old   so he is the middle child and only boy .. the two girls seem to be  alright..   In my head i place the blame on me .. Er, i spent   the next  few days teary eyed thinking about  what ifs and whys ..

  the other day he walked up to me and placed his hand  on my face  and smiled , made perfect eye contact for just a second .. and  made  me realized that the truth is  i dont know why   no one does and that doesnt change who  he is .. My son  .  


So that is my story so far .. He has shown alot of progress since  we have him in therapies ..  he is now repeating things said  and doing small  commands . he is a very  smart little boy and loves to  be praised .. I look forward to  seeing  what  the future as in store for him ..  My advice is  if  told  not to worry or  boys are just slow.. Listen to your gut feeling  because mothers always know.. 

autismexpertrighthere
autismexpertrighthere

At 2 yrs. old my son was diagnosed with Autism. It took around 6 mos. We went through Early Steps here in LA, USA. I was completely crushed even though I knew. My feelings have changed but only because he is progressing now. My son screamed day and night out of frustration. DAY AND NIGHT!!!!! My advice would be that as hard as it is....trust others, get all the help you can, and stop trying to do everything for them. They are capable. Every time I underestimate my son...he proves me wrong and then you may add guilt to you list of woes.

sarahjp6
sarahjp6

We went to the paediatrician and walked out with a diagnosis. He asked lots of questions and based it on that - my son is four and has Asperger's. It was great because it meant we could access funding and services straight away, but it does mean that we are now trying to get assessments done to work out exactly what he needs (he's been diagnosed for two moths)

KimmiElder
KimmiElder

@sarahjp6 wow, where is that? i am trying to get my son diagnosed, he absoloutely fits almost every criteria of aspergers but he only got seen by the paediatrician today for the first time after being on the waiting list for over a year!!


lesleyw
lesleyw

can i just ask! dose this show on my own facebook page or only on this site? thanks