ASD diagnosis - worried

[Ahhhcantthinkofagoodname]

Hi everyone

So DS (age 3) has just got ASD diagnosis. We knew he had a severe speech disorder but it's kind of a shock to get the ASD label though if im being honest we knew he met some of the characteristics when we got a book about it a few weeks ago.

Feel v sad for him though pleased we will get more support and speech therapy than we have up to now.

One thing that we are immediately wondering about though is how other kids will treat him. Already he has been teased by other kids at nursery. When he's at school in a years time (apparently he will be fine in a mainstream school but will have a statement that means he gets extra support) we are worried he will be excluded by other kids or even bullied because he is different.

what do we tell DS about his condition? What will the other kids at school know about his situation? We don't know what to tell our friends who have kids as we're not sure we want them (ie the kids) to know he has this label. All very confusing.

Any one who has experience of this kind of stuff, i would love to hear about what you think. Thanks.

Sorry your having a hard time. My eldest son who is nine, has two friends. One has autisum the other asperges. My son is intelligent but has never mentioned that these two friends are different.

My middle son who is five has a severe speech delay due to dyspraxia. He has has some very good friends who so far have not questioned why he is different. If this will always be case - I don't know. But some kids are really nice and not always looking to bully.

I have tried to explain to my son why he goes to the hospital for tests constantly and why he is different / can't do all the things his friends can. He isn't aware he is different and as far as I can make doesn't question the hospitals. I am going to ask the pead about this in October. But for now he is oblivious and happy. As long as he happy I'm happy. Explains to my nine year old that his brother was disabled for life didn't go well and I wish I had waited for him to ask in hindsight..

Thanks for that 2boys. DS has also been diagnosed with verbal dyspraxia as well as the ASD. Lovely to hear your DS has friends who accept him.

Anyone else? Especially interested to hear how schools deal with the situation, do they protect the SN kids enough adn promote kindness and tolerance amongst the order kids?

My Dd3 is nearly 11 and has Asd, she has some lovely friends who are extremely tolerant of her quirks. She copes well at school most of the time although she does need extra support sometimes.

Her school is really inclusive and has children with many disabilities, we moved her there when she was struggling in a very middle of the road school where they werent interested in her differences and just wanted to make her the same as everyone else.

I didnt tell Dd3 about her Asd until she was 10, this was probably a bit late on reflection as she has been much more comfortable with herself since she knew. She is happy in her own skin now and confident in her differences if that makes sense.

A good book to read is "Freaks, Geeks and Aspergers syndrome by Luke Jackson, he wrote it when he was 14 and he gives some good insight into his world.

Good luck and keep coming on here for support

My DS with ASD went to MS primary school with a 20 hour statement. The LA autism advisory teacher came to the school and gave the whole class a talk about 'invisible disabilities' aimed at their level, and specifically about my DS when he was in Y1. (Without DS being there.) This was with my permission, obviously. Reception seemed too early to do this. The class went from calling him 'naughty DS' to being (mostly) tolerant and protective. There will always be some bullying from some DC, but this disclosure really helped my DS. Something to consider?

He's 13 and in secondary school now and doing fairly well. He's fairly average academically, better in concrete subjects like maths than English. He wasn't talking until he was 4.

Please don't be delayed getting a statement. I waited until DS was in Reception, he didn't get support until Y1. I requested statutory assessment myself rather than trust the school to apply but should have started the process earlier.

Kids have been fine with DS all the way though apart from one very, very isolated example, who himself has significant (unsupported!) SN's so I can't consider him to be representative of all children in any general sense.

DS has been through four primaries, so I consider that a reasonable representation of kids generally. Any prejudice/bullying has come from adult sources in our journey.

TBH kids accept all sorts without judgement, from different races & cultures right through to ability levels. They have to be taught to be bigoted and small minded - this is something I've always found quite sad.

Though it is nice to see that by 9 (my lad's age) NT kids are capable of cheeking their own parents back if they over hear the occasional bigoted rant about one of their mates . Kids are much more loyal than adults and watch each others backs, especially if they have grown up together.

When your child starts school he'll be no more of a bullying target than the kid with red hair, the one who wears glasses, the one for whom English is a second language, the fat kid, or the one who is a head taller than everyone else.

I'm not gonna lie and say you won't face lots of challenges, but other kids being mean on entry to school is not likely to be one of them unless you are exceptionally unlucky imho.

This has also been my worry. But a recent convesation with my 11 year old cousin reassured me that there are so lovely kids around. I asked her if there were any children who needed extra teachers help in her class n she said yes, x has autism and is a good friend of mine i help him in class and sit next to him.

Thanks so much everyone, really good to hear mostly positive things.

Ellen, we are def going to get a statement but also going to look at whether it's an option to delay starting reception by a year as DS is very young in his year. If this happened we would want him to be a year behind all the way through so he stayed with the same cohort of children.

The stuff about the autism advisory teacher doing a talk sounded v good, my instinct is that being open about it in a school with a inclusive tolerant culture has got to be best.

Another question then - any tips for making sure we choose the best school for DS? I guess we'll be able to select which primary we want cos he'll have a statement. It would be so good if we could pick a school he could be at for his whole time at primary. I'm guessing it must have been tough making the switch from one school to another.

Go with your instinct for how much you want to hug the head teacher and SENCO. Are they brilliant friendly welcoming open people who see your lovely young one as the fab person they are, and want to know how to make school a brilliant experience for them? Then that's the school.
We made a couple of errors with our own DS's schooling (he's autistic and other disabilities). Both times I didn't trust my instincts on the Head. Both times I realised I should have done.
DS, by the way, has grown up to be Prefect of the school, played national level rugby, and gone on to Uni - all from having pretty severe autism, dyspraxia, dyslexia and specific learning disabilities. He has lovely friends, too. Was it hard work? Oh yes. But it was also a journey that was worth every step.

Ahhh if your DS is young in his year I think permanently putting him back a year may be a good thing, but, for some reason, LAs and schools don't like it and it can be almost impossible to arrange unless you can get it written into his statement. LA's arguments against are that he could be teased about it later on (small potatoes in my opinion) may hit puberty earlier than others (as if there's not a wide variation anyway) but more worryingly, they may try to make him 'catch up' the year at some point, which would mean losing his peer group. You would miss a year of free schooling at the end of his time in school, which is normally the year when they turn 19.

My own DS is October birthday so I never felt the need to defer a year but the special pre school he went to used to regularly have DC for their Reception Year, then they'd repeat their Reception Year in a MS school and continue throughout their school career in that year. It all became much more complicated when the 30 DC infant class size law came into effect and the transition period of that law coming in finished in about 2001.

DC cannot be taught in the wrong year group if that would take a place from a child of the right age unless they have a statement that specifies this. If you can find an undersubscribed school it's not so much of a problem, but even if it's undersubscribed for the year your DC should be staring school there's no guarantee it will be the next year and your DC may have to start in Y1, missing the much more laid back year that is Reception.

Good luck with your statement process, come on here to ask questions about it, we're good at picking apart badly worded and illegal statements.

Amberlight nice to see you around. You and your DS are pretty inspirational on this board.

My eldest son is 6 and was diagnosed at 4 years. He struggled a bit at nursery as he didn't communicate in the same way as his peers and I was constantly being told of his hitting or inappropriate behaviour but the other children were never aware of his being different, just accepted that was how he was. I hated it and got upset at each report of inappropriate behaviour. I read up about speech delay, had his hearing tested in case it was a simple case of Glue Ear and then had him assessed by a Speech Therapist.

From there we went to Developmental Paediatrician and then finally a diagnosis of ASD. By this time I had to apply for a place in school but struggled tremendously as I worried as his differences and even looked at home-schooling (which, in fact the local authorities are not keen on and offer no real help or support save to check up on you, to ensure you are following the national curriculum)!

I was advised that he should attend a mainstream school as being fairly high-functioning (whatever that really means). I chose a school locally, where I could be on hand if necessary and which faired well in the Ofsted report. The Statement was in process and I delayed his start-date until this was awarded and kept him at his private nursery, one more term. Luckily, he is a December baby, so older than many starting Reception. He joined in February, as opposed to the September prior to his 5th birthday.

He does well, makes friends, falls out with friends, makes newer ones and often does better with those slightly younger as the communication is comparitive with his developmental stage. I did have a struggle with his initial classroom assistant as she was inexperienced and I made my displeasure clear to the Head insisting that my son not be used as a teaching tool but that he be provided with an appropriate person, already able to help him. She was changed and now he receives excellent 1:1 help, together with joining in with the rest of the class.

Children do seem to just accept the status quo and he is accepted for who he is - his idiosyncrasies, unique game play and various foibles are just accepted as being who he is. They simply accept that he has his own desk in the corner, where he has 1:1 lessons and that he also joins in with them at other times.

If children are going to pick on others, it can be for so many reasons - hair colour, size, colour, abilities etc., this does not, so far, seem to be a reason for him being singled-out. He is not aware that he is different to them and it would seem, the feeling is mutual. He has a fantastic, warm, intelligent & caring classroom assistant and the SENCo is very on-hand for any queries or worries I have and very proactive at making changes, if necessary.

My worries, naturally, still remain as each week, day or hour passes that he attends school but on the whole I no longer cry each time I leave the school after drop-off and as long as he remains happy to go, learns new skills and still retains the values and manners he is taught at home, I have renewed hope that he will grow to carve his own place in this world.

My advice would be to not focus too much on the Ofsted but more importantly the feel of the school. My son voiced his wish "can I go here mummy", when having the tour and I had an instant rapport with the SENCo. Rely on your gut-feelings and if you feel the need to voice your fears and apprehension, as I did, along with a lot of tears, which were met with understanding and reassurance.

I wish you every success and empathise as I now send my second son, recently diagnosed with ASD in to Reception this September. I shall shed tears again on his first day but am learning to trust that he will be supported along the way and if in any doubt, have no qualms about voicing my concerns again. x

Please do not worry. Its easy for me to say as we are 11 years on from where you are, but he is still the same little boy. DD was 2.5 at diagnosis, very young for a girl, but completely non verbal and with no interest in other people, with gross and fine motor delays ... but she now won't shut up, is an a* student, and plays 2 instruments close to professional standard. She is autistic, friends are a struggle (she wants be liked but is so inconsistent with people, ignoring them if she is doing something, thinking about something. ) but life gets easier, the tantrums get less, one thing about autistic people is they tend to be very predictable, so i know she won't deviate from what she has been told, ideal when they are out alone. We are worried about her going to uni as she will need support, but we'll face that then.

diagnosis is the start of a journey, not one you can be sure about the destination, nor one you wanted to make, but it can end up taking you to wonderful places, meeting great people and with an outcome far preferably to the place you originally booked for - i now have more issues with my neurotypical child! I don't know what life would have been like if she were"normal" but not as rich i suspect.

On the subject of what to say, we didn't but at the age of 10 in humanities she chose for a presentation "what is autism?" she never consulted us and we found out at parents evening. She is also keen on self diagnosis which probably isn't to be recommended but she pulled,studies,of anti anxiety meds in teens off the internet after her psych suggested it could help, then told me categorically no! Don't rush the conversation but be truthful is my advice, and it will depend where onthe spectrum they are

Thank you so much for all the replies and nice stories. Your kids sound amazing.

Really appreciate all the p advice on schools stuff, it's great to know there are so many experts accessible on mumsnet!