What was your child with asd like then and now?

[Laurajay84]

I write this as a mother of a 3 year old who was diagnosed with asd last month. He is non-verbal and struggles with interaction and sensory issues. He is our world and is such a joy to have around, funny and affectionate . However, I do wonder how he will change as he gets older. If his temperament will stay the same, if some things will get worse or better, or whether things will stay on the same trajectory?

I'd be interested to hear other people's experiences, in particular what you child was like at 2 or 3 years old and what they're like now.

[fanjoforthemammaries7850]

At 3...very much in her own world. Sat stimming, didn't interact.

Now at 9..sings, loves tickles, gives cuddles, has eye contact, waves to people, tries to speak, understands the value of human Interaction :)

[fanjoforthemammaries7850]

Still non verbal though, but toilet trained. Can go to many more places.

[fanjoforthemammaries7850]

In fact from never interacting at 3 now she deliberately plays up to get attention, all the time. :)

[Laurajay84]

That's lovely, fanjo My DS has great interaction with me and DH but other people seem invisible to him

[TheWizardOfOs]

At 3 DD was just starting to show differences. She developed huge separation anxiety and screamed every time she was left anywhere (for the next 12 years!). The enormous meltdowns were just kicking off too.

Now.....

She's 18. At college. Drives. Has a part time job. Is mostly delightful. But it's been a very long hard road getting here.

[pinkchampagne1]

Three years old was the age DS was when I started to suspect he was autistic. He already had an IEP at nursery as he struggled with social interaction. If a child came up to him he would walk away into his own space. His language was okay but he spoke in a sing song voice. His gross motor skills seemed very behind other three year olds. I also started to notice that he covered his ears in noisy environments and developed a few tics.

My DS is 16 now and he stands out more amongst his peers as they are all becoming adults and he is still very immature. He has always struggled to concentrate at school and doesn't see the point in learning. He gets a lot of extra support from the dyslexia unit at his school. GCSEs have been very stressful to say the least!
His life is his X Box and if you take it away for a period of time as a punishment he has huge meltdowns. He still struggles to use a knife when eating a meal and often won't even pick it up. He also struggles to hold down friendships and sometimes appears not to bother if he has friends or not. It can be almost impossible to have a sensible conversation with him as he talks constant nonsense. It can give you quite a headache! I worry about him leaving school and going out into the real world.

[Mumoftwinsandanother]

don't know whether this will help as we are not far away from the diagnosis ourselves but lots has changed. At early 3, DS was lovely funny and affectionate but had no concentration span, spoke in very short sentences (2-3 words), no conversation as such and only interested in immediate family. Not toilet trained and ran away. In just 9 months he is completely trained (no accidents), still funny and affectionate, a wee bit more anxious in social situations but also much more prepared to have a go at talking to strangers/peers. He is no longer particularly impulsive and does not really runaway often. I do not think any of his asd traits have got worse particularly (apart from anxiety). I am now hopeful that we will have a nice life.
When DS was initially going through the diagnosis process it felt like the end of the world. I woke up and every day felt black. I was jealous of everyone with NT children. (His ASD is clearly very mild but it felt like the worse thing ever). I don't feel like that at all anymore. I still worry a little about the future (and more than I do with my NT kids) but generally I just think how lucky I am to have him and how he makes me proud everyday and how life is still really good for the 5 of us.

[lamya190]

Hi my experience is the same as mumsoftwins. My son went through the diagnosis process at 4, i used to wake up thinking about autism and sleep thinking about it. His autism as quoted by all the therapists and doctors who saw him is mild. When he was three had hardly any language and now at five is in mainstream school doing fabulously! Is one of the most popular boys in class, is from the top in reading and maths and enjoys school so much. At three I felt his future was going to do bleak and thought how would he cope at mainstream school. He has no ehcp and now extra support really and is doing fine up until now. I obviously can't predict the future but I see light at the end of the tunnel and feel quite positive

[toconclude]

Looong term perspective. My son is now 25.

At 3 (and until about 5-6) still in nappies day and night, major (screaming floor-starfish tantrums!) meltdowns at certain changes, could name things and repeat stock phrases but not really communicate, used to run up and down the white lines in the road, obsessed with Thomas the Tank, no real relationships...

Went to a WONDERFUL MLD school with autism unit, then mixed MLD secondary with unit and mainstream, then mainstream full time at 14 with support and a LOT of close work with teachers and us.

At 25 he has GSCEs, A levels and a degree, is active in local politics, has part time sessional work (taking notes for other disabled students and data entry type), manages his own money and has lived in digs. At home now for financial reasons but wants to strike out again. Still autistic though :-)