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Child with ASD and how things change

(4 Posts)
MrsMartinRohde Wed 29-Mar-17 13:14:06

DS1 (age 7) was diagnosed in January. I just this week got the report through from his neurodevelopmental assessment. Reading the recommendations for him, it made me come on here for something and a couple of threads made me think. One was asking what signs ASD children had at about age 3, the other (about DLA) talked about how the gap between their child with ASD and a NT child of the same age increased as the child gets older.

Going through my son's assessment, reflecting on what made me realise we needed to have answers/get him assessed, a year ago when his struggles, in year 2, and the gap between him and his NT peers, were becoming much more starkly apparent... well, he has changed a lot. At 3, at school nursery, they raised concerns early on, which I see now were gigantic red ASD flags but at the time I put down to his age (newly 3) and his lack of experience in a childcare setting. I didn't pursue anything then even though behaviourally he was very hard work, and his grandmother (who has an older gransdon with ASD and was an experienced childminder) was vocally concerned. But - whatever his issues, it never seemed severe enough... ha. Oh well, hindsight and all.

In reception and year 1, though he didn't progress academically in the way his intelligence would indicate, he stayed below the radar so far as his teachers were concerned; his behaviour was probably on the edge of "normal". And for a variety of reasons - not least the fact his dad and I were splitting up and divorcing - we didn't pursue our own concerns for him.

By year 2, he was off the edge of the "passing as normal enough" scale at school, socially, and he was still nowhere near doing as well as they expected him to academically, and hence we sought a referral with the 100% support of his teachers.

He's now halfway through year 3, and in some ways doing pretty well; he's in intervention groups for maths and literacy, where he's thriving because he isn't as "lost" as in the main class.

But I am after experiences - how has your child changed over the years? What's harder? Is anything easier? What have you tried, in order to support them/yourself? What worked? A year ago my son didn't have (or I didn't perceive it) an area of special interest/obsession; now his whole life is centred round Minecraft and YouTube. He didn't really have any repetitive mannerism/noises (he was generally active/fidgetty), now he does (occasional hand flapping, almost constant noises with his mouth, finger pulling). But he can be much more reasonable, and he's definitely much more open and affectionate with me (though about the same in terms of other people - lack of eye contact, won't talk unless it's about his special interest in which case he'll bang on till the cows come home, a sense that he just has nothing other than that to say and no idea what it's all about anyway).

Thanks, I appreciate anyone's input - I know I can't possible have an idea what to expect when he's 9, 11, a teenager - which is scary actually but there you go. smile

Spooningleadstoforking Sun 02-Apr-17 19:05:40

hiya i was only talking about this with my friend the other day so had to reply to your post !

things definitely change ! ours has been for the better but this may be because the last few years have been hell on earth. we seem to be out the other side of our worst bit - big crossed fingers !

my son is 14 nearly 15 and he is now 60%-70% of the time manageable at home. this is mainly due to me being more educated on his needs and him being more able to express and understand how he feels.

we definitely still get problems but where ever I can predict a possible trigger I will change the situation to prevent it causing a full scale meltdown. At the moment china bowls are a problem, if we dont have any left in the morning he will not go to school. so I make sure there is one in his room the night before to reduce anxiety and prevent a meltdown. He has his own milk (full fat) his own sugar (Billingtons Golden Granulated) and will only eat bacon without potassium nitrate, to name just a few. I recognise these are all control issues which we should try and breakdown over time but at the moment it works for us. If he gets to school at 11am I dont look at this as a failure anymore - at least he is there !!

He also went through minecraft and other game obsessions - at the moment he plays Clash of Clans but hurls abuse and death threats at the online opposition so we do need to work on that.

We used to have mahoosive problems with socks but thankfully that is no longer a problem as he can express that he hates the feel or texture of something so I dont buy it - saves so much time and money

Education is one of the biggest problems for us - currently winging it wishing id studied disability law/responsibility of LAs at university

another positive for us is that he is not a follower and very sure of his own opinions, he is not swayed by peer pressure at all - many kids in his year are having sex, doing drugs and getting drunk. He thinks this is the most stupid thing ever - this is a big bonus !! however on the other side his opinions do get him in trouble - he is very opinionated on Trump, immigration and the state of the NHS. He does not have an off switch, he will go on and on and on in his pursuit of his justice and has an answer for everything - rational conversation quite often goes out the window. Exhausting !!

I also wish he wasnt the oldest as his behaviours have had a significant detrimental effect on my other children.

he is amazing at sport and has the quickest reflexes ive ever seen - he quite often catches flys out of the air !

so many ups and downs - to every positive there is a negative.

Good luck !!

Lemonjellymoonstar Mon 03-Apr-17 18:21:33

DS was diagnosed with high functioning autism when he was 3. He's 12 now. Once he started to talk (at almost 4) things vastly improved. The meltdowns gradually went away, but he did used to cry a lot as a younger child. He would get hyper focussed on things that he wouldn't eat or go to the toilet unless he was made to. Also he has always been quite forgetful, which has got worse as he's got older (maybe he just has more things to remember now he's supposed to becoming more independent). Other than this, his autism hasn't been such an issue in primary school. He day dreamed a lot and concentration was an issue. He also was slower to complete work than his classmates. But he still did well in school. (Teachers would sit him at the front of the class to minimise distraction). He is a bit weird (his own words) and his friends like this about him, so he's never had a problem with having friends. I even doubted his diagnosis at times because he was doing so well 90% of the time.

Now he's in high school, things have got more difficult. He's more forgetful and disorganised than he ever has been and he zones out a lot too. Making friends has even been a struggle because he wanted to fit in so mimicked the behaviour of the cool kids, aka the little shits, in his class. We've had to start thinking about new strategies for him after resting on our laurels for years, and thankfully they're starting to work. We got him some fidget toys which help with his executive functioning (being organised and paying attention) and we have stopped talking about the consequences of things he does, and instead started using prompts etc.

Ellie56 Tue 11-Apr-17 23:23:34

Our youngest son was diagnosed with autism when he was nearly 8 although we had known since he was 3.

Infant school was a bit of a nightmare - one teacher said he was naughty, awkward and lazy. He also had a lot of bizarre behaviours but he grew out of these as he got older.

When he was in junior school we had real problems with behaviour - meltdowns, throwing things, climbing out of windows, threatening us with knives etc. and at times I really feared for the future.

I now realise a lot of this was down to his school not giving him the right provision and enough support . The gap between him and his peers was widening all the time. At the end of year 2 he had been functioning at age appropriate levels but by year 6 he was well behind the others in his class as lessons became harder and more abstract.

He calmed down when he went to secondary school. He settled really well and very quickly. They gave him virtually full time 1:1 support in class, put him in small groups for English and maths and worked on his social skills etc etc. Teachers there said it was a privilege to have him in their class.

He has continued to improve all the time. He has developed a sense of humour and is very caring. When he was 16 I couldn't envisage him ever living away from us or doing anything on his own. The idea of him catching a bus by himself was unthinkable. Four years later, after training , he was able to catch the bus back home from college. He is now 22 and regularly goes out on his own in the local area which he is familiar with and sometimes catches a bus into town. He can use a mobile phone and is always told to take it with him and keep it switched on.

Mainstream college was a nightmare as they didn't understand him and just expected him to fit in with everybody else, so we had a really bad 18 months where our son got more and more stressed and was eventually diagnosed with anxiety disorder. We had to fight the LA for an EHCP and a different placement which took its toll on the whole family.

Happily, after 2 appeals which the LA conceded, our son is now doing really well, continuing his education in a residential college, where he is also learning independent living skills, with a view to living either on his own or in supported living further down the line. He is very happy and his anxieties are reduced considerably.

Although there are still difficulties and anxieties, I would say our boy has become easier to live with as he has got older.

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