Autism Awareness
In this series we are exploring both the context and content of the education provided children with ASD.
To help us with some background we are running a poll to find out which environment your child receives their education.
Please take part in the poll below.
Autism Awareness
Yes I know it does sound a bit odd that a blog run by the father of an autistic 6 year old should want to write about autism blogging. In fact it comes over as pretty self-indulgent. So please bear with me.
A couple of days ago I asked on the Facebook page which we run on Autism and ASD (https://www.facebook.com/AutismTalk) a question regarding our readers favourite autism blogs. Do you know what? Only one person had a blog to recommend. Someone pointed to the brilliant Facebook page “Autism with a glass of wine“ (https://www.facebook.com/AutismWithAGlassOfWine). If you had not already liked and shared the page we strongly recommend you do so.
Now this really did surprise me. Because back in 2009 when our son was being diagnosed I read autism related blogs daily. I discovered from these blogs that progress could be made and that other people were in the same boat as me. This helped me cope with a very stressful process.
As life moved on I started using Facebook more and then started my own blog so I took my eye off other autism blogs. So today I’d like to change that and promote a few of the blogs I’ve found useful over the years.
Please do visit all of these blogs. They’re all different and all terrific.
Of course this does not cover all the blogs out there. If you have a blog (or would like to recommend somebody else’s blog) please use the comments box below to add a link and a brief description.
Thanks in advance
PS We are hoping to make this sort of post a regular feature of the site so keep those autism blogs coming!
Autism Exercise Topics: Proprioception and Sensory
The following guest post comes from PlayThroughAutism.com. Get more information about topics
like this, including a free Autism Exercise Ebook sent directly to your email by subscribing here.
Proprioception and sensory are widely discussed topics in Autism literature, and understanding the implication on physical activity can be immediately actionable for getting our kids to exercise more effectively. Proprioception is essentially our body sensing and working with the world around us.
Let’s focus on proprioception in relation to our spatial senses. Spatial senses tell us where our arms and legs are as we move around. We use our proprioceptive senses when our mind tells our body how to physically and technically do the exercises we intend to perform.
However, propioceptive sense is more than that. It’s the feeling you get “in your gut” when you are falling, and how springboard divers and gymnasts know when they have done 2 twists instead of 3. Some kids love to experience this sense and jump off of things or rock back and forth. Controlling this sense can also be comforting for many kids with autism.
“The child with ASD will learn to roll, crawl, and walk, but the quality of their movements may be poor. As the child gets older, they may struggle to function at more sophisticated levels when they have not mastered these core skills. As a result of differences during development, children with ASD often have deficits in equilibrium and righting reactions (moving the body to maintain an upright position), protective reactions (putting a hand out to catch yourself when falling), and movement strategies (persistent w-sitting). These differences may present as clumsiness, lack of coordination, lack of attention, hyperactivity, gross motor skill delay, flat feet, toe-walking, postural instability, poor posture, decreased respiratory control, oral motor difficulty, and flexibility restrictions.” (Ghaziuddin & Butler, Gillberg, Kohen-Raz et al., Hallet et al., Vilensky et al.).
So what does proprioception and sensory mean for helping our kids with autism exercise?
It goes without saying that exercise is important for our kids’ physical health. However, exercise and play therapy have been shown to improve the lives of kids with autism by supporting self-image, integrating with peers in natural ways, decreasing unwanted behavior impulses, and exploring personal capabilities.
For instance, a therapist can use play observation to assess balance, protection reactions, and motor planning skills. The therapist can also assess the child’s posture in different positions, determining how posture changes the child’s motor control. The therapist can then analyze which muscle groups are being underused or overused, and help set a plan to correct that. For example, a child who is a “toe walker” may be overusing their calf muscles. Understanding how to incorporate more active utilization of the opposing muscle group, and stretches to loosen up the calf muscle may help somewhat. For a look at a quick assessment of posture using a simple squat, check out this post.
Next step – decide which actions specifically we are trying to motivate relating to fitness. Our list probably looks something like this:
Awareness of the Challenges of Proprioception for Kids with Autism
Sensory integration refers to the brain’s ability to receive and process sensory stimulations from the environment. This includes three basic senses – tactile, vestibular, and propioceptive.
The tactile system refers to the nerves under the skin’s surface that send information such as light touch, pain, temperature, and pressure to the brain. This is important for perceiving the environment, as well as protecting from dangers. Issues with this system could lead to hyper- or hyposensitivity (such as tactile defensiveness which makes a person extremely sensitive to light touch).
The vestibular system refers to senses and structures within the inner ear that detect movement and changes in the position of the head, such as when the head is up or down, even when the eyes are closed. Issues with this system may be on either extreme. One extreme is that they are fearful of even small normal changes in vestibular stimulation making it difficult to learn to walk on stairs and unstable surfaces. On the other extreme, the child may like these sensations and want to jump, spin, and roll excessively.
The proprioceptive system, what we want to focus on for our exercise purposes, refers to the muscles, joints, and tendons that provide awareness of body position. When proprioception is functioning properly, a person’s body position is integrated into their sensory awareness and can be automatically adjusted. For example, the propioceptive sense helps us to step down a stair smoothly, or to judge the necessary speed to sit in a chair. This sense also helps with using fine motor skills such as writing with a pencil, or buttering a piece of toast.
Issues with the propioceptive sense are evident through clumsiness, falling often with out being able to catch yourself, odd body postures, difficulty with dexterity and apprehensiveness with new motor skills.
Motor planning refers to a persons ability to plan and execute different motor tasks. This takes into account the following systems to accurately take in information, perceive it properly, and then executing on those senses with appropriate actions.
What Can This Tell Us?
The implications of dysfunctions in these sense areas can mean lowered activity levels and being easily fatigued or easily distracted. It can also mean that children with autism fluctuate between these extremes and can be hard to predict. Becoming frustrated, aggressive or sad, and withdrawing are all common.
The goal is to eliminate environmental senses and stressors that are not consistent with the desired exercise outcome and to increase the motivation techniques the help to support proper exercise. Read here for information about motivation.
Finding Quick Fixes for Frequent Sense Issues During Exercise:
Sight: Sensitivity to bright and flashing lights or other people or objects moving quickly in the exercise area can cause too much stimulation to be able to focus on the requested exercise. Try to move toward an area of the gym or exercise room where other people are not running or throwing things. Ask that flash photography is not allowed in during your training times. If it’s possible, try to dim the lights a little during your exercise times or seek out natural lighting. If these options aren’t available, try to move toward a corner of the exercise area and face the corner eliminating other distractions.
Hearing: Loud music is a staple of most people’s workouts. However, loud and/or fast paced music may cause too much distraction and simulation. The person may not be able to filter multiple sounds at once and might make it hard to focus. First try eliminating extra noise, such as turning off the music. However, the silence may also be distracting so try to find music to add with a slower beat and less percussion. Find the right music may be a good way associate exercise with something the kids already like. For instance, one of our athletes loves High School Musical. Associating the High School Musical soundtrack as a reward for exercising well has proven to be a big help in keeping him focused.
Touch: This can be a make or break point for many of our athletes with autism. The feel of our cross-stitched trampoline mat can be a great sensation on our kids’ feet and the feel of the foam in our foam pit can become fascinating. However, the chalk on the mats, or the instructors hands on their sides as they attempt to use the bar, can be completely devastating. Find the sources of distress and see if they can be removed. However, often the sources of pleasure can be just as distracting. See if there is a way to turn these into awards associated with exercising. Using a foam block the kids loves to touch as a target on the floor when we are doing bend and reach exercises has proven to be a big help.
Smell: It’s not embarrassing, people smell sometimes when they exercise and gym’s or other exercise areas often try to mask it with worse smelling air fresheners. Sweat is natural, lilacs mixed with aerosol and rubbing alcohol is not. Ask to have ventilation and better airflow as a means to control scent, and to eliminate any artificial air fresheners. If this isn’t possible, try to open a nearby window or door yourself to get the scent as neutralized as possible.
Finally, let’s focus on internal and external feedback. Internal feedback is when the child feels his or her body in space and can adjust as necessary. External feedback is when the child is told to change his or her body position or is somehow guided to make the correction. We have seen a lot of progress with trying to incorporate both internal and external feedback, by using mirrors to allow our athletes to see themselves make the corrections that either they feel are best internally, or we are asking them to make verbally or guiding them to make through contact.
Thank you for reading and I hope that you can use this information to help create a healthy and physically active lifestyle for your child with autism. For more exercise ideas, get the e-book below!
*Much of this research comes from this article: Dr. Joni Redlich, DPT, Autism Spectrum Disorders and Physical Therapy: The Motor Connection. January 2010
Please feel free to ask any questions or share any ideas in the comments box below.
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?
| 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 | 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 | 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? |
| 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 | 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 | 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 | 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 | 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 | I’m still not diagnosed for it. 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. |
| 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 | 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. |
| Fluffy rabbit | 15 years old |
| 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 | 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 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 | 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 | 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 | 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. |
| CelineBrito | In reply to RosieMarie.When other 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 | In reply to CelineBrito.CelineBrito Gifted! That is the word I have been looking for. |
| RosieMarie | In reply to DaniDe.DaniDe Love the advice. |
| RosieMarie | In reply to HeatherOstler.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. |
| 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 | 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……. |
| 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. |
| PatriciaValiente | In reply to purplefroggy20.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. |
| 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. |
| HeatherOstler | In reply to HeatherOstler.Oh… and dont forget that your beautiful little person is still the same beautiful little person. A diagnosis will never change that. 🙂 |
| HeatherOstler h |
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.) |