What next now DS 2.5yrs is autistic?

[MilesForSmiles]

Sorry about the title I was trying to keep it short.

My son has been diagnosed as autistic by my local community paediatrics team. It is not a surprise to me I have suspected for a long time but it has thrown me to know what I need to do next.

Barring this site I am not on social media e.g. FB IG etc. I have been told to join parenting groups for autistic children and seek out local support.

I have also been told he'll have blood tests and genetic screening to see if there is anything else going on. I am grateful for this as I worry and I would like to know if there is anything else I need to be aware of.

My question is I guess what am I meant to do next both practically and things I haven't thought of? To prepare or not as the case may be. I keep trying to read up but there is so much information I am struggling to make sense of it as it is simply so overwhelming.

Can anyone assist me in things I ought to be doing which I am currently not. I know there are specific topics on here for this but I just don't have the energy to try and seek it out (I'm going through a separation, losing my home, troubles at work etc!). TIA to anyone who can help.

My son was diagnosed at 2.... In some ways not a lot changes. It's more based on what your son's care needs are.

Portage can be a good service, it's like play therapy.

Do you need OT, SLT?

I would say the fb groups can be really good so worth just making an account, you don't need anything personal on it. I also follow a lot of amazing therapists on instagram who do great content.

Is your son at nursery?

Where are you in the country?

My DD is a similar age , not formally diagnosed but like you it won’t be a surprised.

if your son is struggling with speech development , good to arrange for speech therapy / relevant waiting lists. Is he in daycare at all, and if so are you happy with how it’s going? Could investigate small group options etc. School still a while away but depending on waiting lists in your area might be good to look at options. My daughter is 3 this summer but we have her on waiting lists for some SEN options as well as mainstream because we don’t know which is more realistic.

hope you are OK. I am also not on FB but heard the groups can help. Did a couple of in person support groups but they were quite heavy - lots of people crying etc - not necessarily heloful but you never know til you try

i am also reading More than Words by Hanen (very expensive as out or print but often recommended) for building communication, interaction, etc etc.

Contact your local Social Services department- or family information service- they will be able to advise you in regards to nursery/school places- social groups- Disability living allowance.

If you contact your local council they will be able to give you the contact numbers for these.

I'm in Hampshire. I believe the paediatrics team are contacting the council in relation to his schooling and needs. I am waiting for a letter to come through from paediatrics and I hope that will tell me more.

He does need SALT and we're on the waiting list for that. I'm sorry I don't know what OT is. It sounds as though paeds are going to be keeping him coming in from now on but I'm honestly not sure.

Please can I have some IG recommendations? I am happy to join and look up things but I don't know where to start. I don't even know how to use social media. I guess I need to learn.

I'll look at that book mentioned. In person support groups with lots of crying won't be helpful for me. I want to be positive not dwell too much on how his life may be affected.

I will get in touch with HCC for some numbers.

Thanks so much for the help.

Occupational Therapy is OT so they help with things like sensory regulation, eating, sleeping, dressing, potty training, day to day stuff.

You will need to chase the LA for everything it's really tiring.

Ask them for list of local groups, there are often local charities and portage that support families.

On fb Toby Henderson Trust is a good charity to follow. There's a very big autism parents group on fb, also Ask autistic adults group can be helpful.

On instagram I like Jessie Ginsberg

instagram.com/sensory.slp?igshid=YmMyMTA2M2Y=

I would strongly recommend posting on local fb groups and asking if there are any other parents of autistic children locally - it's very beneficial to have support and guidance and not feel alone.

On instagram I recommend fidgets.and.fries, she's a wonderful Black autistic woman who talks about the intersectionality of that in the USA, but more relevant to you is that she has two sons with different support needs, one is non-speaking so she discusses communication assistance in a lovely nuanced way. UK based, minimoores, also autistic, with an autistic toddler about your DS' age. And similar is millenialmumma1. That should give you enough to get the algorithm started

My son was 2.5. I'd set up a throwaway FB account as the groups on there are excellent. I use Space and Add-Vance. I'm in Hertfordshire. Because of those groups I have done loads of courses and made a lot of friends. It all helps me with management strategies. DS has been very very fortunate with education given his early diagnosis. Literally everything was in place by the time h finished nursery. He's now 11 and about to finish a very positive and happy primary education. It makes me hopeful going forward.

Here are some things I can think of off the top of my head

• apply for DLA. You can use the money for things that will benefit your son.
• start the process of applying for an EHCP. Gather evidence/reports from any services (speech, OT, nursery) and use them to apply for DLA (Disability living allowance) and an EHCP. In my experience it’s much better to get an EHCP in place as soon as possible. You will then get support in other areas, can name a school that is the most suitable for your child etc.
• every time you meet a new professional e.g. speech therapist, mention things that your son struggles with and ask to be referred to e.g. OT. Nothing is coordinated for you- you have to do the research and ask for help. It’s frustrating.
• Be persistent but polite to professionals. Seek out the best but in a nice way!
• portage is excellent (if available in your area). The lady who visited my son helped loads!
• Don’t take no for an answer. If you’re told there is not enough evidence for an EHCP, gather some more evidence.

I love your positive attitude. Children change and develop all the time. Focus on the here and now as much as possible.

Omg literally everything that @Della1 has said.

Yes I should have mentioned DLA and if you are staying home with him, carers allowance too. Also a carers card which gives you discounts etc.

Thank you all so much for these suggestions it has been really helpful and I've started up an IG account and will do with FB soon.

My friend has really helped too and a wonderful lady she has contacted got in touch with me to go on a course her charity runs.

I looked into DLA and I can't work out whether my son would qualify. He is completely mobile (finds stairs difficult) but from a care element he is only 2.5. However, you cannot trust him to stop when out. He doesn't understand danger etc so would this come under the extra care? I'm not sure. I put him in nursery sometimes when he doesn't need to go for one a break for me and for him as his behaviour after a weekend gets either more boisterous (been with dad) or clingy (been with me). I hope that doesn't make me an awful parent but he loves nursery and it seems to turn him into a different child afterwards.

My DD is 3.5, also has ASD and was on the diagnosis pathway at 2. I applied for DLA before her diagnosis came through and she was awarded middle rate care which is just over £60 a week. She doesn't have a mobility award as she needs to be 5 to qualify for lower rate mobility and doesn't meet the criteria for higher rate mobility which can be awarded from 3.
I had supporting evidence from her SALT, portage worker, nursery SENCO and paediatrician which I sent plus her EHCP.
When you are ready to apply call the DWP and ask postal form. DON'T download it from the website. If you call up they will send you a date stamped form and will backdate any award to the date you called. If you download it they will only award from the date they receive the completed form. It's a very long form so it took me a while to fill it all in and copy all my evidence. It's totally worth it though. The money we get for my DD pays for her private SALT (DD is non-verbal)

Forgot to say in that long winded reply that not understanding danger absolutely comes under care criteria for DLA!

There is a guide by cerebra which is very helpful when applying for DLA. It is all about extra care needs compared to a typically developing child of the same age rather than diagnosis. At age 2 for mine it was things like not being able to communicate needs and wants, not understanding instructions, not being able to feed himself or do any part of personal care such as dressing by himself and needing 1:1 support right next to him in situations when other children could be watched from the side and waking for hours during the night. Not understanding danger wouldn't count at that age unless they need much more support than is usual to keep them safe.

Not meaning to hijack the thread but interested in hearing more about portage? We are not in the UK so I don't know if it's available here. I looked a bit on some websites but still don't understand what it is so well. Interested in hearing a bit more so that I can research if there is an equivalent here.

One frustration we are having at the moment is the seemingly endless cycle of therapists / support sources moving on, changing staff etc.. Of course that is normal in any job but I feel like so much of the time granted is spent on intakes / "getting to know" DD for new people joining. Feels like whenever we take one step forward we take two backwards. Not sure if anyone can relate !

For us portage come every couple weeks to

Oops sorry

Portage come every 2 weeks to our house or park/soft play. They play with my son and otter play advice. They keep a record of his progress across key areas like tj HV review and they chart this.

They are supposed to help with Nursery, but they have been useless in that regard

Thanks regarding the information of what a typical two year old could do. He definitely needs more help as you have put. He cannot dress himself. He only communicates by taking my hand and leading me places. He cannot understand instructions and when I say he doesn't understand danger I mean things like he will run in front of swings so I literally have to hover around him at the park. You cannot leave him unattended. He has no interaction skills with others including children and adults. But he is trusting of them. I will look at the cerebra guidance.

I get DLA for my DS - only care element as he is 4 but that will change when he is 5. You can apply and the worst they can do is say no. Make sure you send copies of ALL letters/reports even if you don't think they are all that relevant. One report I recieved said that my DS struggles to listen so I made sure I sent a copy of his hearing test to rule it out.

@MilesForSmiles also look at the National Autistic Society website, they used to do some really good parenting courses.

There are a lot of interventions you can do yourself at home.

This site is brilliant for free OT resources.
www.theottoolbox.com/

This is amazing for all sorts of free printable downloads, e.g. task charts to help with getting ready in a morning
www.twinkl.co.uk/resources/home-early-years