Hey mums I have recently found out my little man has autism spectrum disorder and is at the severe end of the spectrum he is almost 3 and doesn't communicate I'm wondering if any other mums who have children like this can make any suggestions where they have found success in finding tools and ways to communicate. My speech therapist has said sometimes other mums can find tricks and stuff they haven't even though of. Also is it worth going to the autism family meetings? Or anyone know ways I can find him some friends? Unfortunately all my now ex friends and his ex play dates have had reaction like I told them it contagious and there something wrong with him he doesn't play rough and is very sweet so would never hurt anyone. Please no negativity I have already been told many ways that this could be my fault and am fragile at moment just thinking of long road I have in front of me to get my boy communicating and learning.
13 Replies
I'm mum to a 21 year old son on the spectrum and worked in early intervention for many many years.
My son was non verbal and on the more severe end of the spectrum.
My starting point would be finding an autism specific speech therapist or applied behaviour analysis centre (ABA) is the gold star, evidence based therapy for kids with autism. It covers everything from self help skills, social skills, communication skills, academic, language and gross motor depending on your child's needs. It's been around for over 50 years.
But some things you can do yourself and made a huge difference for my son was starting the Picture Exchange Communication Program (PECs). If you go to the Pyramid website it explains it all and if/when a training session is available to you. It basically teaches a child how to communicate his/her needs using pictures, this reduces frustration, teaches them the importance of communication and gives you the opportunity to model and shape speech. It doesn't stop children developing speech but increases the chances of speech developing.
I always advised my clients to do PECs and then if needed move on to using a iPad/iPod to communicate with if speech hasn't developed after 12 months or so.
A couple of reasons for that are iPods/iPads need to go on charge/break/expensive etc and so the child will always need another way to communicate if/when it's not available.
Neither the PECs or iPad/iPod are things you can just plonk in front of the child and they just understand what you do. They need to be systematically taught. So PECs provide an excellent framework and are definitely more than a set of pictures you find on the Internet. There are some excellent apps for the iPod/iPhone specifically the Grace App (designed by fellow autism mum) it's relatively cheap and comes with an excellent teaching protocol.
If you like to PM me on Facebook I'm happy to chat.
PS I'm asking around the mums with younger kids of some good Autism Facebook groups you can join. Some are great, some are scarily weird feeding there kids bleach to cure there kids autism etc.
so i want to make sure I don't accidentally send you to a crazy group!!
Many many many autistic people class ABA in the same tortuous "scarily weird" category as the bleachers
If your son is an adult now, it's well and truly time you started connecting with other autistic adults about what works, what helped them etc
I'm actually autistic myself!!!! And yes some do, but in my experience they haven't experienced modern day aba. Old school ABA I agree was not pleasant, but like most things it's moved on. The ABA my son received was based around play, positive reinforcement and communication and nothing to do with eye contact, and sitting at tables for hours on end! In fact my son spent most of his therapy laughing his head off and is kind of pissed he doesn't do it anymore!!!
Google ableism and ABA
Even with subtle changes to the programs, the focus is still on teaching the child to pass as neurotypical as possible
Do you think I'm not well read on the subject??? My son has never been taught to pass as neurotypical! His quirky delightful characteristics are very much celebrated! Never quashed ever, ever. His interests are very much encouraged.
His program focused on communication, language, motor skills etc never have we stopped him stimming, forced eye contact etc.
There is no way our service provider mentioned or tried to make him pass as neurotypical.
First of all this is not your fault!! I am a mum of two kids with Autism on different places on the spectrum one is high functioning and you can barely tell he has Autism but he's been in speech therapy since he was 4 years old, he's now 9. My other son is 7 he's been in speech and ocupational therapies since he was 18 months old. None of it was my fault and in the beginning I blamed myself but nowadays no way. It comes from their fathers side anyway. Do not let people blame you the blame game is harsh and will not get you anywhere. You have a diagnosis now which means you are eligible for better start/fachisia funding use it. Find a speech therapist your happy with and take your son to as many sessions as you can, do lots and lots of therapy at home and if he's at a childcare centre let them know and they can apply for funding so someone can be hired as an extra set of hands in your sons room and can do therapy with him there. Lots of repitition and I mean lots. Pecs cards (cards with picture of items) visual timetables and a really good strong routine. Keep calm but there will be days when you can't. I still have days where I cant keep calm and my 7 year old drives me nuts. He wasn't fully toilet trained until he was 6.5 some don't fully toilet train at all.
As for the play dates you are better off without people who treat you and your son like that. It's not contagious and it definitely isn't something they need to worry about. In fact playing with "ordinary" children is great for our kids it's a shame some people are so shallow it hurts but you will find new friends who accept your son the way he is. There will be people in your life that need educating about Autism some people think there is no hope for our kids but there is. My son was 4 in kindy was non verbal and had so many meltdowns I didn't know what to do. Now he's in year 2 and got the class meritorious award for his class last year. And communicates quite well he still struggle with socialisation but he will grow in time. He's great at maths and telling the time, he's an awesome speller and can read like you won't believe. Never underestimate your child's abilities they surprise everyone you just had to find what works for him. Try everything!!! Your life will change as much as you let it change don't let it bring you down. There are so many therapies and therapists that you can try never give up. I know autistic children that communicate with a tablet ( iPad) and you can get plenty of apps for them to.
I'm an autistic mum of 4 autistic kids and one weird neurotypical kid
ABA is torture, please don't put your son through that
Find a way to help him communicate by all means, but communication doesn't begin and end at speech, he can learn sign, he can use visuals, eventually he may prefer to type, they are all valid ways of communicating
Autism is part of who he is, and he is perfect as he is, his value in life doesn't increase the more neurotypical he appears
Join groups, get to know other parents, other kids, but most importantly, seek out autistic adults, they are where the wealth of info and support lies
Respectfully Connected is a lovely Facebook page to checkout and get you started
There is nothing wrong with autism, with being different, there is nothing wrong with you or your son
https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/
Amy Sequenzia is an amazing non verbal autistic advocate, please check out her work
http://sydscarnivalofsouls.com/2015/03/21/amy-sequenzia-non-speaking-aut...
Just found this and blown away with excitement!!!
All my favourites blogs, activists and articles in one list
Required reading for anyone involved with autism
http://allisticntprivilege.tumblr.com/post/48778013205/so-you-want-to-wo...
My son is 3 years old and was diagnosed with severe autism and global developmental delay just after his second birthday. At that time he had no words and was unable to communicate at all. No pointing, imaginative play immitation or waving. And he had many sensory issues as well as repetatively spinning objects and himself. 1.5yrs later he is a completely different little boy. My advise would be get your child into as many early intervention programs and therapy as u can. My son did 5 days a week of speech therapy Occupational therapy and saw a phycologist regularly too. Now he is able to immitate most play and copy and complete tasks almost at his age level. And is waving and pointing. He also has about 50 words he uses regularly. And he does not spin anythings or himself anymore! We still have many behavioural issues to overcome but i couldnt be prouder of the progress hes made. Which to be honest i never thought he would have come this far. My advise is be persistant and Dont give up! My son did really well with word and picture boards to help him communicate as well as a bit of baby sign language. We used to attend a special playgroup called playconnect its for kids with ASD maybe try and find a playgroup for kids with similar needs. Good way to make some friends who are in the same boat as u. Good luck!!
Ring Autism Queensland in Edmonton, they have a 2-3year old centre-based group program which offers speech and OT support within the program. 3 days a week Mon-Wed 9am-2:30pm. Great great program.