Son diagnosed with autism - now what?

[ForTealSwan]

this is more so a rant. I need to tell someone and I don’t know who to tell.

My 3 year old little boy just got diagnosed with today. He is non verbal and doctor said he was developmentally between 18 months and 2 years old, so I had my suspicions. But now that he has been diagnosed I just can’t believe it. Is this feeling normal?

What do I do now? Do I send him to special need school or mainstream school? How do I help him? What are the resources available for him? Will he ever speak? Will he ever be independent? What if I answered inaccurately during the interview and they actually misdiagnosed him? The speech therapist said he made eye contact and exchanged smiles, but the clinician assessing him said he had very poor eye contact. I’m so lost!

Ah, OP, that sounds really tough. We were where you are a year ago, although our DC is older and has different challenges, and it can feel overwhelming. I spent the whole day post-diagnosis bursting into tears randomly. I felt like I really had to remind myself that my DC was still the same DC, we just had an explanation for why things were difficult.

You won’t know yet what’s right for your DS school-wise. Does he go to nursery at all? Is he due to start school this September or next September? I would start to look at the EHCP process now, ideally with his nursery if he goes to one. If not, your health visitor should be able to advise. This will secure him more help when he does start school, regardless of setting.

You should also look at applying for DLA, as he may well be entitled to it.

You should get some kind of written diagnosis and possibly a report if it was done privately. They may recommend further assessments. It sounds as though he needs referring to speech and language therapy ASAP (if that hasn’t already been done?).

In your shoes, I would focus on meeting his needs as they are now, and helping him with lagging skills. Try not to focus on the more distant future (I should take my own advice here 🙄). My understanding is that if they hit enough markers for a diagnosis, then they are autistic and that won’t change, but it doesn’t follow that their needs will present in the same way as they get older.

You will be in denial ,doubting yourself and everything you have said or that professionals have observed. This is perfectly understandable at this stage.
Take your time to let it sink in then come back ready to “ fight” for everything that your little boy needs and is entitled to.
Ask about the Post Diagnostic pathway. If you can get on the NAS EarlyBird course this will really help. Meeting other parents in the same situation and sharing tips and experiences can be invaluable.
When it comes to school choice listen to advice but you make the choice that you feel is best. Visit mainstream and special. With an EHCP you will have a wider choice of mainstream schools. If there is a special school available consider the benefits of their facilities, small classes, whole school communication approach, specialist staff etc.
One step at a time though.
A specialist OT assessment may be helpful. Not all OTs specialise in sensory needs.
Good luck navigating it all. You can do this. Things will be much clearer this time next year.

Is he in nursery? If yes ask the senco to do a Sen plan. If no it would be an idea to consider trying nursery just to see how he manages (although you may know already wether he would cope) your local authority will have a Sen department, ours has two teams for under fives there’s one that support childcare providers and one that supports parents in the home you could contact your local authority for more information.
If you were considering Sen school he would need a ehcp, (educational health care plan) which you or a nursery setting can apply for.
It would probably be best to look at some mainstream and Sen schools the year before and get a feel for them and what they can offer.
Is he under speech and language? If not request a referral they can support with activities to do at home to try to bring on language.
is there any local support groups/coffee mornings in your area? They can be a mine of information and understanding.
The assessment will have included an observation of your child , it’s done by highly qualified professionals who know what they are looking for. You can’t mislead them.
My son is 9 and autistic , I suspected from around 1 year old and similarly to you he was delayed developmentally and non verbal. He also got his diagnosis at 3 . At the time ds was in nursery but needing 1:1 support which the nursery gave. After diagnosis nursery applied for funding for support and we started the ehcp process. He goes to mainstream school, he has always had 1:1 support and over the years as expectations increase this has increased and it is now all day support.
My son did start to speak around 4 and use to repeat what you said (echolalia) gradually he began talking more and by 7 he was fairly fluent but he will often give you the answer You want rather than what he thinks. He talks for hours about his obsessions though.

He was incontinent until around 7 too, he wore pull ups to school in reception and school regularly took him to the toilet (he couldn’t ask ) until he managed it himself.
Academics my son is above age related in subjects that interest him (maths, science , geography) and less good in those that don’t. He is stillseveral years behind socially and emotionally and has little interest in making friends.
I had to stop thinking about the future as the uncertainty of it panicked me . But now I can see in 6 years my son has become verbal, toilet trained, excels in some subjects, is able to manage mainstream school, he loves computers, is a maths whizz, enjoys reading and playing board games. I have no idea if he will have a relationship or work or live independently but I know a lot can change so I don’t dwell on it.
Read up on autism, a big part of parenting an autistic child is managing their environment making sure they are able to manage and advocating for them. Try to find a local support group or online, there’s a great one on Facebook called ask the autistic adults which is ran by a group of autistic people who give great advice at managing behaviour.
And remember you child is still your child that hasn’t changed.

Hi OP - my son is an adult now. He was diagnosed just after turning 3. He is still non-verbal but very communicative. He uses eye contact very well to communicate on his terms, but won’t follow someone else - which may explain the different observations.

The outcomes in terms of speech have varied amongst his peers but tbh although I used to be desperate for him to talk I realised as he got older it wasn’t the biggest issue.

years ago I would have said don’t stress about schools right now, but in many areas special schools are now incredibly hard to get into & you need to be bothering people from early on. If there is a specialist feeder nursery that would be good to start with, but do focus on local knowledge. Ask for support groups, or whether as a PP said there is an Earlybird group. It’s a good way to meet people. Finding someone in the same situation that you click with makes the world of difference.

My son now lives 5 minutes from us with 24 hour 2:1 support. His team are all young men like him and are now a very stable team. He goes out every day. He has always been affectionate and I still get a lot of cuddles from him. I see him nearly every day. He pops into ours to raid our fridge. He had some very tricky times in later teen years and early adulthood but his life is good now. He was always a real outdoors boy when younger - spent a lot of it hiking or in the sea.

Be aware that autism is very wide ranging and having learning disabilities can make a big difference to the lived experience. Look for others similar to your little boy. Those people will get it in a way others just can’t.

If you are willing to try alternative therapies to help manage symptoms take a look at this video on youtube and see if it is something that you could consider.

Can Ketogenic Therapy Help Autism and Mental Health? | Dr. Eline Dekeyster on Mechanisms & Hope

My son is 18 now, he was diagnosed aged nine and struggled with the one size fits all approach at school. He didn’t talk until he was five
he has eventually found himself, happy at college and been offered a pt job at a cinema. I would never have thought he’d get to this place. He was written off in school as a hopeless case, refused to go a lot and now is heading off to uni in September.
I guess what I’m trying to say is things work out despite the difficulties and they eventually find their way

Just place marking but I will post later.

Your feelings are completely normal.

Now you’re left to endlessly battle the education system and the health system

Welcome to the club.

Sorry to sound so glib, but I’m yet to meet an autism mum who hasn’t had to (and I’ve met a lot)

This site is a really good starting point for navigating your way through

https://notfineinschool.co.uk/

You need to have him in the right setting for preschool and look into early intervention techniques and therapies. Don’t think too far ahead because progress etc is so variable. My was diagnosed at 2 but by 4 did gain language and was mainstream educated throughout by my insistence, she’s extremely intelligent and gifted, now married!

Read up on different types of approaches, my dd had aba therapy from 2-5 years old which has its detractors but I swear it made the difference.

It's good that you know already. Is he in a pre-school setting? If so, start the EHCP process. If you do want specialist provision at school it is best to have an EHCP already in place. He is young and a lot can change even if he is currently non-verbal but it will be helpful to start the application anyway. You can apply as a parent.

It will all be area dependent, and what's available in your LA my son was diagnosed at three and seen by the education psychologist ,who recommended he needed a special school, in my LA we have two special needs primary schools and two special needs high schools, one primary, and high school caters for children with moderate to severe learning disabilities and the other two cater for children with severe to profound learning disabilities
We also have several autism hubs
You need to look around different setting ,s ti see where you think will meet your child's needs and also ask to be referred to the education psychologist as they can give you ab idea what setting is better for your child

That's not true for all is it?
These threads always frustrate me as whilst I know posters try to be positive,many fail to take into account the vastness of the spectrum
Non of us can say how the Op,s child will be aa an adult they are on their own trajectory.

The journey starts now. I would advise you to take time to take it all in before you jump ahead and think of his education and his future. I would get in touch with the national autistic society who can help you on your journey. I would also go to any support groups in your local area. I found them very helpful and have made several friends through it. It's difficult to describe to anyone what you're feeling and people in the same position can empathize.
The diagnosis doesn't define your son
He just experiences the world different to you and I.
Read everything you can. It will give you a better understanding. Just enjoy your son and take one step at a time. Enjoy today and think about tomorrow when it comes.

What you're feeling is completely normal.
I knew my daughter had autism and if the assessors had tried to say otherwise I would have fought it, but I still uncontrollably cried and felt (and still do at times) a lot of grief when they confirmed the diagnosis back in Oct 24. My daughter is 3 since Jan. So I'm only a bit further on the path than you are, and have a lot of the same questions as you but I mainly came here to say you're a good mam and you're doing well and your feelings are valid.
I'm in Ireland so the Ed system etc is probably different but I'd immediately start to look at early intervention preschools, any and all financial supports that are available (and don't feel guilty about it, I did but it's there for a reason and is helpful) and perhaps start to look into what therapies your child may need eg mine is very sensory seeking so we've prioritised OT. We've had to get it privately so again take any financial assistance.
Take it easy on yourself also xx

This is tough. My DD was diagnosed about age 8. High functioning and verbal but we were told she would never live independently. She has two older siblings and a younger one. Obviously we had to make some allowances but we tried to steer normality because the world won't bend. You're DC is still very young so stay hopeful and strong. Incidenly she's now 22 with a child and one on the way but dealing with life better than most women and I'm in awe. There is hope. He's very young

Do I send him to special need school

That is very dependent on his level of need and he would obviously need an EHCP.

May I ask if there anything physical wrong with your DS?

How has he behaved so far in his life? Is it just being non-verbal? I ask, because my son didn't talk or walk til past two. Then he had his tonsils out and was talking well, but there was opposition from some medics who said they would never agree to take tonsils out, they they ''didn't do that''.

There is always hope. Has his hearing been tested? Has he had scans? Only if all the physical possibilities are eliminated should you settle for autism. There are so many different symptoms of autism that I wonder why one word covers all.

My question is well meaning, and I hope posters take it as such.

It'll be a lot of feelings you feel, but don't feel you need all the answers right now.

Three is very young for a diagnosis, my daughter was on the pathway for diagnosis at nursery and finally had the diagnosis a six. The diagnosis itself didn't really change anything for us though, it just helped us label it.

When she went to nursery, we requested an EHCP after speech and language were involved. The EHCP takes a few months to gather information from the everyone but once her needs were established, and the EHCP was granted, we could choose which school she we would attend, in agreement with the local authority.

As you have a formal diagnosis, it'll make applying for DLA frelatively easy but it's needs based so which level you would get is dependant.

Try not to worry, although I'm sure you will. My dd is selective mute at school, completely opposite at home, lots of meltdowns and although it is really difficult some days, we carry on family life as we would have otherwise. I'd say she was at the extreme end of the scale.

Hello - I really can relate to your post, I have a nonverbal assumed autistic (his nhs assessment is next month) 3.5 year old.

couple of things we’ve done…

• apply for DLA, it’s a horrible, negative overwhelming form but we were successful and it funds weekly speech therapy and more
• speech therapy with a early years specialist in non verbal kids is making a lot of difference. He may not be verbal yet but I am seeing an improvement week on week
• again using DLA funds, we got an OT assessment, plus an OT assessment at nursery. This helped us put in place strategies to manage transitions and sensory needs
• using the above reports get the ball rolling for an EHCP
• try and get along to a support group. I’ve been to our local NAS coffee mornings and I’ve found them helpful.

please feel free to reach out, sounds like we’re in a fairly similar situation.

I think it will become more clear whether he can go to mainstream school as he gets a little older. Research local Sen schools and ask them if he would meet their criteria.

My son is autistic and goes to a mainstream school but he didn’t have speech problems. There might be local support groups in your area, after my son’s diagnosis I got sent through a leaflet with a list of these (though none of them are very close in our case but you may be luckier).

I’ve found having a strong routine helps him most. Explaining what we will be doing early on each day. Sticking to familiar timings and foods.

@llizzie I understand why you ask, but the diagnosis won’t just have been made on the non-verbal aspect. There are several different criteria to meet

I don't know entirely, but just wanted to say that I've known a significant number of kids enter YR non-verbal, with many interventions in place to help them cope in mainstream, who then go on to do really well and overcome loads of early challenges and barriers to learning by year 2 or 3.

So I would say try to stay positive and not underestimate what time and support can do (with a caveat that it is also sadly true that for some children with ASC, mainstream is never going to be an option).

Autistic DS's eye contact isn't too bad if he feels comfortable, as soon as he doesn't it drops away fast. It might just be that he really took to the speech therapist and wasn't so keen on the clinician!

If your DS has been misdiagnosed then his diagnosis can be changed/removed as he gets older, you can't blame yourself though! You can only tell them what you've noticed, you are not trained in spotting traits and knowing their relevance, it's up to the doctor to make the correct diagnosis.

IMO a non verbal child will do much better in the small class size that they'd only get at a SEN school. Everything can be tailored so much more towards an individuals needs in a much smaller class and the sensory overload for an autistic child will be greatly reduced. I know non verbal children that have attended mainstream and they have developed hugely - but by yr2/3 the gap in what they are doing at school can become very large and I think it can become a bit isolating. They can then have to face moving to another school which can be really difficult if you're autistic and struggle with transitions. To me it's much nicer to be able to join in fully and be working on things at a similar level to those around you, but that's just my opinion and every child is different.

Hi there,

can I ask when you say he « started talking »…was it like he suddenly woke up speaking fluently or was it more like he started to say some words and the. One or two years later was speaking fluently?

I have read so many « stories » and everyone is different!