ASD toddler - Please share experiences

[Zara84]

My son has ASD, awaiting assessment but he used to speak over 40 words and then regressed at 2years old… he now only uses about 3 words.

He doesn’t mix with other kids and only now has started playing with his brother when he wants (they sometimes chase each other around the house or will play with the same toy) but this is only new and on his terms

I see weekly pictures from nursery of all kids playing or doing an activity and my son is always the one standing by himself in the corner…it’s just all breaking my heart.

he communicates via hand leading and pointing mostly but I just want to hear from
anyone else in a similar boat - what have you done to support your child best ?

thanks

what have nursery done to help him get the most out of his time there?

Search “autism survival guide podcast apple” or “autism survival guide podcast spotify” - you can email in for advice

I had a hair test done first and foremost to see toxic metals. DD was toxic in lead and aluminium.
I did the hanen more than words course for 6 months for speech
I kicked off the Nemechek protocol 1 month ago , to deal with SIBO
Ive been doing hair mineral analysis to support her lack of zinc and magnesium
She has a SLT coming 1 a week for 1/2 hr as of next week

and thats it for the moment. shes just turned 3. A year ago she had non eye contact, didn't reocgnise her name, pica , and didnt play with toys

now she interacts with kids, stopped pica, good eye contact, knows name and is pre verbal.

@Lostmum1906 why did you think your child’s autism was caused by metal?

Because we have no asd on either side ,
She doesn't have leaky gut syndrome which is another cause.

High lead is positively correlated with asd

I don’t believe that any of that is part of mainstream medical understanding of asd.

I agree. I read Dr Eck and Dr Lawrences book on nutritional hair balancing.

They discuss asd in detail and they point out the 5 main reasons of asd.

I can understand why dd was high in lead as I had a massive build happening when she was 9 months plus and it lasted 1.5 yrs. Old paint must've ripped and pipes etc would've exposed her to lead.

Thankfully her lead levels have come down in the last 4 months and she is showing much more engagement.

Mainstream medicine don't know why asd happens. The Dr at the time said there were no answers to why dd was like this.

I think lead levels are often higher in children that have pica.

Dd' zinc and magnesium were low, lead and aluminium were high, toxins.

During htma mineral supplementation, her zinc has gone up .

Zinc , calcium , iron difficiency leads to pica.

She was only difficient zinc and magnesium.

The uprising zinc has lead to the stopping of pica

My understanding is that maximising health with supplements is beneficial but that the age range experiencing higher levels of eg lead, (it occurs commonly for longer in early childhood in the autistic community was thought to be related to mouthing/pica occurring more persistently than for a typically developing child. This seems logical to me because our children often hit those early milestones later and persist in early behaviours longer and more vigorously.

Many years ago the idea that autistic children were damaged by heavy metals was fairly widely proposed. Some parent pursued exclusion diets and even chelation. I think it was debunked and some children were really hurt (I think there were deaths though I’m sure you could google).

The idea that autism or tendency for autism to develop in certain genetic lines, that it is “inherited”, is imo given far more weight than it warrants. Yes, some genes have been linked to some groups of autistics but by no means have we found a genetic marker or even a group of genetic markers that indicate autism is present. The idea that little Johnny is autistic because Great Aunt Mabel was a bit odd and only wore green, rather diminishes the diagnosis and frankly most people have a weird Aunt Mabel. For many (most?) parents of autistic children their child will be the first autistic person in their line.

Are you Uk based @Lostmum1906 ? I’d be really interested to hear where you are from and what support you were given to signpost you to this being the cause (obviously only if you want to share) because this is an unusual course of action here.

Yes, I am based in the UK.
I agree this is an unusual course of action. But something I am heartedly doing, because I am a scientist that looks at patterns by training, And really, if DD was absolutely fine at 9 months, and then not later, i wanted to get to the root of it. And I think I have to some degree, she's totally different and improved from last year.
And I am yielding results, with no setbacks.

Are you aware of the “normal” trajectory of debtor autistic people @Lostmum1906 How does she sit in that framework? What pet terms did you see and why did you focus on that area (also intrigued to know what area of science you are working in)? It’s not a unique area to investigate but hasn’t been particularly profitable (that I’m aware of).

Sorry that should read

Are you aware of the “normal” trajectory of development in autistic people

How does she sit in that framework? What patterns did you see and why did you focus on that area (also intrigued to know what area of science you are working in)? It’s not a unique area to investigate but hasn’t been particularly profitable (that I’m aware of).

@Zara84

Just want to reach out and say we are going through the exact same with our 27 month old.

Won't play with other children, hits and pushes them instead. Always on his own.

What advice did you get from your HV? Ours hasnt been very forthcoming so far. Reckons its "age and stage". I have a 6 year old who was never as extreme as this - and he was a handful.

@ScottishMumAKABruh

nothing was ever flagged by HV, he was fine in his 2 year review, engaged with the HV as expected. I at the time flagged that he didn’t like play group and we had tried a few and usually he just wasn’t interested in taking part and the HV just said keep taking him as he was a “Covid baby” and hadn’t socialised much.

his speech was developing beautifully and he hit all milestones.. then after his 2 year review we started to notice a decline in speech; got his ears checked and he did have glue ear which was treated. But then came the severe speech regression, and lack of interest in things he once enjoyed..loss of eye contact and no response to name and hand flapping / was absolutely devastating

however since starting nursery the hand flapping has stopped, he does maintain eye contact, does respond to his name, and now does engage with his brother…..which is why I continue sending him. Even though deep down I do think nursery isn’t do all they should be doing to support him ( I have a meeting with the senco this week)

praying for ease for our babies x

@Zara84 That's absolutely brilliant news, i hope the upward trajectory continues.

@Ohthatsabitshit I dont wish to derail this thread. I just wanted to share the direction I used to get more engagement from my dd, that is all.

Given how Ive felt over the last year and a half, I hope all mothers see a glimmer of hope in the darkness and fear they experience when their child gets diagnosed.

@Lostmum1906 if you don’t mind me asking who did you use for the hair test sample, I have thought about this in the past ?

@Lostmum1906 I don’t think you’re derailing, but I think you are surprisingly reticent on detail. What triggered your initial steps on this path, who has informed you along the way and what results have you attributed and why are fairly easily answered. We have over the years had many different approaches and treatments discussed though it’s less common recently. We are all forging our own path so it’s interesting to hear others thoughts and motivation. I am a great believer in maximising health in the face of difficulties. To me that is a logical response. I’m highly sceptical about “heavy metals” as a source of autism, as I am/was about holding therapies, refrigerator mothers, or immersive ABA programs. It doesn’t mean I’m not interested, just they do not seem to hold out to rigorous testing.

Would be interested to know who you used for hair testing? Thanks.

www.hairanalysisuk.com/hair-analysis-test-uk

Its highly specific in terms of what you need to do.

I wish you well. I hope it yields something for your son.