Concerned dad of non verbal child

As an autistic adult who’s listened to people all over the spectrum and parents all of this is familiar with autistic people.

When you mention he’s stopped speaking, many parents I’ve listened to said their child(ren) stopped around one to two years of age and began to withdraw from the world. They found it to be the result of their child being overwhelmed by other people, a professional I listened to said around the age of 3 kids begin to pay more attention to other kids around them, the social environment, but individuals on the spectrum overwhelmed by the environment try to tune it out.

After suitable therapy involving building inner strength these children restarted speaking and communicating enabled to build a relationship with their parents.

Your third and fourth will vary more greatly between individuals on the spectrum. Concerning missing you, if you’re part of your child’s life your child will miss you when you’re not around, it’s just autistic people express things like love and gratitude in a different way to most people.

Hello 

our son was probably the brightestof all our kids around first birthday or so lost early language he had and regressed in his development.  It was felt he may have had a form of infection that may have hit him at a crucial time in his development. This was all a long long time ago and many tests followed as I was in the NHS and well connected to experts. EEGs Blood tests CAT scans and others.  A diagnosis of Autism was made early on and while difficult at the time in the long run it helped.  Our adult son is 28 now he is non verbal and has epilepsey and other associated LD but Autism is the primary diagnosis.  He continues to live with us and is supported by us and his wider loving family siblings etc. Unfortunately our son never regained verbal language and is classically autistic.  Become familiar with the Triad of Impairments. That said our son communicates all the time its just in a different way through gestures postures eye movements sounds use of PECS and also a communication IPAD.  Our son is heavily dependent upon others but can do a great deal for himself if supported 1 to 1. Adjusting to his disability as a father of three when my other children were able and well was very hard at first for me.  I was angry and resentful and probably fearful as a Dad.  Talking with other Dads of children with a disability helped a lot and my wife and i went on to lecture on this topic at University post graduate courses.

Advice getting a diagnosis of what is going on is key.  Id certainly move heaven and earth to get a SALT involved with your son as early as possible.  

Create a file of all letters and correspondance re your son with health and education.  Get organised your going to have to hav records of all that goes on.  

Be weary of people who describe themselves with having expertise in Autism. Some professionals are generalists and have limited experience.  Trust your extincts the good people in health social care and education are there you will know them when you find them.

Diagnosis Key, Involve SALT and a good OT early as possible.  Education experts who really understand communication and alternative methods of learning can be worth their weight in gold.

It is hard with a classically autistic child in terms of affection and how they share feelings and needs and emotions.  Sometimes this is done in very subtle ways so you have to be prepared to evolve your expectations as a parent.  It can be tough accept offers of respite from trusted individuals early.  It will make you a better parent if you can refresh your batteries occassionally.  Music songs dance play is a super way to get communication going.  Many use lap tops these days also.

Our son does not have friends in the conventional sense but again you have to change your perceptions how he influences the world and impacts on others is a continued inspiration to us.  

Good luck to you keep talking to others all children to go down different paths i learned not to keep comparing to others either his siblings or others but celebrating all achievements made.  Birthdays and traditional celebrations like Christmas can be a challenge also. Clinical Psychologists if you can access can be very useful once all medical investigations have been done to ensure medically well. 

Good luck, Never Give Up, Give yourself and partner permission for regualr breaks. 

MP

Hi, at the time I bought everything! I was desperate to help him but to be honest I didn’t a lot of the cards. I’d recommend “foods” + maybe a family pack and toys or activities - I’m not sure what packs they have but if you can get some covering these areas it’s a good start. If he’s going to nursery or school they used to make a ring binder so he carry some with him when out and about. 

I was lucky, I live in West Sussex and there was a great special needs playgroup which he attended and I helped out at - other parents there were brilliant for advice ( I passed on the PECS equipment to another mum when he didn’t need it anymore.

I had to fight for it but got him into a special needs school in burgess hill ( now called Woodlands mead) it became a centre of excellence in sussex for autism and went up 19years old. 

I won’t lie, you become very hardened in the process to get the right education - you get told no a lot but just have to stick to your guns and fight to get what your child needs. The Autistic society has a lot of info on disability allowances and entitlements - claim everything you can, the money can ensure your child ( and you) get the support you need.

I think the lack of professional support due to Covid has done a lot of damage to children and families - there is so little at the best times - but hopefully things will improve as we come out of this now. Keep fighting and stay positive - these children deserve to reach their full potential. It is really hard but the rewards are massive.

X

Thank you
I appreciate your response
I'm so glad your son is doing so well. He's lucky to have you, as you're lucky to have him to :)

You mentioned the PECS system. Is there set of cards that you would recommend that i get? Looking online, there's quite a selection.

Additionaly, in terms of schooling, what school did he go to and at what age? My son has just started nursery at primary school. The school are aware of his condition and are liasing with his Paediatrician and Speach Therapist. However it feels like covid has slowed down the cogs of the health system....the worst time possible for my son.

Its good to hear that he found his voice. Even though he doesn't shut up, i'm sure you don't mind it. Congratulations on him getting his first job! He can now enjoy working....like the rest of us lol
My son has changed my life. I just want him to be the best he can be....so everyone else can see how special he is

Your message means a lot
You're a fantastic role model to your kids x

Hi, I am the mum of an autistic 23 year old son. He was diagnosed at 3 having hit developmental milestones until 1.5 then suddenly regressed.

At the time there was little support within the nhs  for speech therapy but I helped him to speak using the PECS system (picture exchange communication system)  of picture cards. I trained as a PECS instructor to do this but the cards are so helpful I don’t think the training is really necessary to help your child - you need patience and common sense. You can start start with a couple of cards ( favourite foods or toys) and eventually build up to constructing short simple sentences.

there are other similar systems available and I believe the costs have come greatly now but you could start with a few pictures clipped from magazines to see how you go. It took Alex a while to speak but it really helped with his frustration at not being to communicate - if he wanted an apple he selected the picture and gave it to me.  Predictably, once he learnt to speak I couldn’t shut him up :-)

if you think there is something wrong see your GP to get a diagnosis rolling as early as possible. Once you have that you can get a statement if needed and get control of his education. I fought really hard to get Alex into the best school in the county but he thrived there and stayed until he was 18.

Alex struggles to make friends face to face but has many online friends, has just got his first job and is hoping to learn to drive next year.  It was hard for me letting him to be independent but he was desperate so we did it in small steps - catching the train to college for example ( it was hard for me just letting him go to college after 14 years at his special needs school) but he loved it.

Getting a diagnosis of any disability for your child can feel shattering - we have so many expectations for them - but Alex has changed my life in so many positive ways and is the kindest and most thoughtful of my 4 children and really, what is “ normal” anyway?

Good luck, you sound like a wonderful dad and I really wish you well x

It’s interesting you’ve mentioned he engaged with music. I know several amazing composers who are autistic. Do you have musical instruments he can play with? Sometimes children’s instruments can de sonically dull or discourage engagement due to their lack of sonic aesthetic when they're cheap.  I might take him to a music store, let him tap on a piano (not an electric one)  a Kalimba, handpan, some ukuleles and a xylophone all have engaging elements and are affordable to start.  Or find a class like this meinlsonicenergy.com/.../sound-therapy-for-kids (sound therapy can sometimes be better than just 'music therapy' because they may be more intensely focused on quality of sonic ambience). But he may appreciate anything musical.

Natural musicians will be able to focus and discipline their craft for 8 unbroken hours. Interruption can be as cruel as assault - worse than pulling the plug on the tele right before the goal or at the climax of a movie. If he can engage in his world in ways that seem as like he wouldn’t "miss you", recollect how affectionate he is and remember that it's his job to attempt to work out how to navigate the world and your job to help, support and think about him. I assume you know this, but it's not a child's duty to think about, let alone worry about their parents. Children who do are usually far behind in development or stunted in careers.

In the natural order of things, animals care for their young, preparing them for a life without them, most never see each other again. With humans, the more selfless a parent is, the more they arrest their ego, their assumptions and whatever they believe they may need from a child, recognise and release those expectations, 99% of these children will, without fail, support, protect and care for their parents in their old age. These children will be loyal and completely trust and respect their parents. I cannot think of anyone I know who's parents were this supportive who do not now have amazing careers and exceptional abilities to navigate life. My job is to help my son deal with a cruel world and offer support however I can. There is something to putting a need to connect to our children into and action which they feel supported or protected or encouraged by - and this could be allowing them to work uninterrupted until bed, not hacking into their flow (regardless of age) but just sneaking a sandwich into their room. For some, they'll need a reminder to use the loo. Give them a time limit for bed and spend time reading them a story. Then invite your mates over if you feel a need to connect.

All children need parents to support how they learn, grow and experience life. They want to feel safe and understood. The autistic brain presents in many incredible ways. Hyper-focus is one of our super-powers, or strengths. There was a brilliant study I read about picture-thinkers, which might help understand why he may have not 'regressed' with words. It could be possible that other elements of intellect are simply becoming more heightened. 

Have a look at these. If they're too clinical, the Abstract gives enough information.It's being recognised autistic individuals use picture-thinking to reason, and experience an articulatory suppression (using words to verbalise/communicate) with heightened reasoning or hyper-speed brain connexions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874898/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8297849/#pone.0255039.ref010 

Just remember to focus on his strengths. Teach him to draw, teach him geometry, definitely give him music lessons. Teach him to read. For autistic individuals, we can also be keenly aware of how difficult it is for neurotypical individuals to keep up with our brain wiring. You may feel articulation and expression of emotion are important and I may feel a more better ability to imagine matters of physics is more important. Both are right. And being parents, our job is to always help meet our children's needs, even at the expense of ours. :)