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!

I’m in exactly the same position! 3 1/2 year old non verbal, globally delayed in all areas, developmental age 18 months to 2 years. He is on the waiting list for an autism assessment.

I think your next steps are EHCP, it took 20 weeks for us to get, he is no deferred for a year at school (he was a summer baby), his speech is developing a little.

I want him to go to a mainstream school and the EHCP will enable that to happen.

its taken 2 years to accept his diagnosis, but he is so happy, loving little boy I now feel that their is light at the end of the tunnel. I don’t think often now about the things he can’t do. Focusing on him and his wonderful personality x

I wish the public were more aware of what DLA is spent on, because so many people think it unnecessary.

I think the NHS and education authorities would be spending far more than the benefits if there were none.

They don’t diagnose unless they’re sure at that age. DS was diagnosed just before turning 3 and DH is a doctor himself. DS makes great eye contact but he’s definitely autistic. All you can do is watch and wait. ASD is a real schrodingers cat situation and you can not tell what you’ll get until they develop. It’s hard! Some won’t ever speak, some will gain a few words, some will be fully verbal. Same with social skills and living independently.

I will tell you what our paediatrician told me though…
Me: I’m hoping he’ll be on the milder end
Dr: nobody who is diagnosed before five is mild. They are high needs and often low functioning.
Me: … but we caught it early so…
Dr: and that’s good but it doesn’t work like that, it’s not an illness to be treated or rectified it’s who they are.

One step at a time
Remember a special school is not " less than"
It might allow your child to grow and thrive at his pace (and they will be delighted if he develops out of the environment and goes on to an academic mainstream school )
Visit special and mainstream and units

And build communication with all means PECS apps like gridplayer or proloquo photos signs etc
Non verbal should not mean not communicating

Hi. I know it is overwhelming atm. My advice is to make connections with local parents in a similar situation. Look at your local authority website under 'local offer' to see what's available.

If he gets dla you can apply for carers allowance if you can't work or earn under a certain amount.

Good luck xx

There is another thread on mumsnet: 'Loud DC and unhappy neighbours. Would you move'.

Your experience might help that OP.

It’s really tough, and I remember asking myself the same questions. Getting diagnosed with ASD at 3, means they have seen enough of the signs to diagnose, otherwise they would revisit at a later time.

My DS was diagnosed at 4, and was non-verbal until 3, he now attends a specialist unit attached to a mainstream school. Start looking at school options, as it can be hard work to get the placement that you believe would be right for your child, whether it be mainstream or a specialist school. Ask nursery / pre-school their opinions on where he would be best suited, if you then decide on specialist start collating evidence ready for his EHCP.

There are so many unknowns as your DS is still so young, try and celebrate the small achievements and not focus to much on things beyond your control.

My biggest advice is to attend a local ASD support group, where you can meet other mums going through the same things as you, or who have already gone through these things. They will provide you with the best advice, share information and point you in the right direction for any local support available.

Feel free to message me for anything!

Do not worry......my little cherub was non verbal until he was 5........now he speaks and can communicate, so I know how he is feeling most of the time👍
The best way to know more is by talking to parents in a similar situation. I had to learn extreme patience and being more quiet🤣🤣 i was so loud and extrovert🙄Tommy is the last of 5 children so it's been a long learning curve.
At the beginning I felt alone and I felt like it was all my fault😔 I blamed myself for doing something wrong😔 That I did this to him😭
I didn't smoke or drink while pregnant......apart from chocolate I was really good, but I felt so responsible at first.
The school was amazing( mainstream) and I've been so lucky🙏 they've managed him beautifully until year 2 and he is going to his special school in September.
They taught me that it's just the way things go sometimes, ( we have severe autism on dads side) and as long as i try my best to keep him happy and safe, he will live a wonderful life.
After endless stressful situations, I find I'm really good at reading him now. Although it's always, every minute, trying to look forward at what challenges may present themselves. I do my best to mitigate the stress and meltdowns👍 it's a continuous learning cycle.......as he gets older, there will be different challenges.......you can do this, and you'll be absolutely fine🌈🥰

You fight to get him into a special school. It won't be easy but it will be best

Absolutely!! Seeing these disability benefit bashing threads popping up are so disheartening. We would be lost without it, and putting much more pressure on NHS therapies which are already stretched to their limit (or aren’t offered at all!)

My child was diagnosed at nearly 9 and it wasn’t obvious younger as it was lockdown and she is a high masking girl which comes with lots of anxiety and burn out issues.

The clincial pyschologist who assessed her said take time to process the report, read a little bit at a time. Autism assessment looks for deficits so focuses on the negatives that doesn’t mean your child isn’t amazing in lots of others ways. Parent a child who autistic won’t look like how you imagined you would parent and that’a fine. For us that means things like DD has started to have breakfast in another room to us this is very different to how naturally want to parent but she needs to free from social interaction before school where she has to work hard socially.

I agree. I haven’t applied as I really don’t think she would get it. Just thinking of what I’ve bought in the last 6 months - assessment, fidgets, ear lops (replacement when as she poor oraginsation skills), sensory equipment, seamless underwear and specific clothes and books and course for us and her about autism. With additional insoles as NHS only give you the current size and you’re seen again in 9 months. A specific brand of holiday, a holiday isn’t essential but she would struggle with coming some where less structured or with less info about it.

Hi, AuDHD parent of two autistic/AuDHD DC here. I'm also a former CAMHS ed psych.

All autistic children and adults are going to be unique. Life trajectories will be different depending on circumstances, co-occurring learning disabilities and conditions, etc. But here are some things I know to be helpful based on experience.

Accepting that your child is autistic is important. Not trying to pretend he's something he isn't. Denial isn't helpful - if this is difficult, try to get some support either via counselling or support groups to process your feelings. When DS is a bit older, he'll need you to help him accept his differences too. Doing the NeuroBears course together when he's primary age could be useful.

Autism is not anybody's "fault" - it's usually genetic. My family is a literal gold mine of undiagnosed high IQ autistics across several generations 😂

Connect with other SEN parents and groups who can help you navigate the school system, EHCPs, etc. This hopefully might allow DS to grow up around other autistic kids, so that he has the opportunity to develop friendships both with autistic and non-autistic children. I've met parents who wanted all their kids' friends to be neurotypical, but all this does is force children to mask and spend their lives in friendships where they're not understood, or they're tolerated and not really liked, or even bullied for their differences. Of course, he won't get on with every autistic child either, we don't all like each other just because we share a neurotype - but it's about the opportunity to have diverse interactions/friends.

Therapies and support can be helpful, but be careful what you choose. ABA is essentially conversion therapy that attempts to teach autistic children to behave in a non-autistic way. It's also incredibly time intensive and exhausting for them. There are kinder, more child led therapies such as AutPlay or filial therapy out there that can support with behaviour, getting social needs met positively (as opposed to just learning to perform neuronormative social skills) and those therapies involve parents and doing things at home. If there are sensory challenges, OT or sensory integration therapy may help.

Good luck - it may seem overwhelming now, but you've got this and will be the best person to help him navigate the world and advocate for him.

This was my daughter 24 years ago! She went from a diagnosis at just 3, non verbal, echoalea only. She went to mainstream with a 1:1 who was amazing. Best advice I was given by an Ed psychologist was to expect delays in development, give her time to process, and to live as normal a life as possible. I made a point of doing random things at random times with my DD, it helped her to be less rigid. Also remember that autism isn't an excuse for bad behaviour! Now she's got her own flat, a part time job, getting married next year, and the point of all this......our autistic children can do great things! Grow up to be fantastic, caring adults, we just need to give them a bit more time and patience

The main issue you need to be thinking about right now is school. Your son will have three possible options: mainstream, possibly with a TA, a unit in mainstream, or a specialist school.

The units are really popular but the places are very much sought after so you really need to get all your ducks in a row if you want one.

My LA doesn't have specialist schooling for primary children except for those with multiple and complex disabilities. There are some nearby independent special needs primary schools though.

My advice is for you to see what's available and what you might want. And start the ehc process very soon. Some LAs have asd nurseries - look into that too.

@laraitopbanana he said odd words like juice and tractor but understood everything you said to him. Then all of a sudden all the stored words came out and he began conversation.
it is a difficult journey full of obstacles but if I have any advice it would be parent the child you have got and not the child you want them to be.

Wow!
thanks for sharing :)
Can I ask what age did he start the convo then? It must have been some time in between...

Also, I totally agree. If a child is « behind » in development, as parent you even more need to be what they would hope/want for.

It usually takes a while for paperwork to come through, to advise you on next steps. My brother was resident in Ukraine until the war, so they jumped in for help when they relocated here after getting a diagnosis back in Ukraine - they contacted the county council and they were allocated a social worker (nephew has high rate DLA, they advised on how to get everything sorted). Mine with my DS was easier as he was already at school, so they advised. Perhaps start with your County Council, and contact SENDIASS who give advice to parents of SEN kids (I contact them too often and owe them volunteering when I'm through the thick of it to pay them back I think!). Also find out of Facebook of local parent support groups, which are invaluable.

Almost 5yo before he was conversing. He started school with a very limited vocabulary. was always behind with all his milestones

Amazing info here.

thank you so much for sharing!

This!

It's quite the battle but we have to do it