2 year old with probable autism - where do we get h... - Mencap

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2 year old with probable autism - where do we get help?

nanguT profile image

I am trying to find out information to help my daughter. My grandson is 2 and doesn't speak or understand any words and doesn't respond to his name. He has intense tantrums and has started getting violent during them.

It seems likely he's on the autistic spectrum, but she can't find anywhere to get help or support until he's diagnosed - and the GP says he can't be diagnosed until he's 3.

Any advice would be very gratefully received.

29 Replies

Social services and they will refer you as well to other support also contact Carers U.K. Association and ask for support through them. Have you got a diagnosis yet ?

nanguT profile image
nanguT in reply to Jofisher

The GP told my daughter he can't be diagnosed until he's 3. :-(

They're already in contact with social services and they've offered no help.

Jofisher profile image
Jofisher in reply to nanguT

Have you spoken to the Autistic society ? They should be able to advise you and why did social services say they can’t help you ? is it because you don’t have a diagnosis yet ? Are you under a paediatrician already sorry to ask so many questions.

nanguT profile image
nanguT in reply to Jofisher

I don't think they have spoken to the autistic society. That's definitely worth checking out. I'll look at their website.

Social services say they can't help because of the pandemic, and tell her to talk to the health visitor. The health visitor won't do anything because there's no diagnosis.

They aren't under a paediatrician.

The questions are fine :-) it's nice to have someone show an interest.

Boeing-747 profile image
Boeing-747 in reply to nanguT

I Would suggest The National Autistic Society and Mencap.Also ask your GP to make a referal to a child psychologist who is knowledgable about autism

Contact Mencap helpline they can help as well and your daughter definitely needs the carers association. I seriously don’t understand social services saying they can’t help that’s ridiculous. Are you in a position to pay for a social worker consultant if you are can I ask where you live.

nanguT profile image
nanguT in reply to Jofisher

They live in Torfaen, south east Wales. I don't think we could afford to pay for someone.

The Autistic Society have closed their helpline and don't seem to have a group in Torfaen. I will tell her to phone the Mencap helpline though.

Jofisher profile image
Jofisher in reply to nanguT

Try this organisation as well dewis.wales for support

Jofisher profile image
Jofisher in reply to Jofisher

Hi I’ve just put into google support for disabled children in Wales and lots of things came up so have a look and see what you think

I wish you luck

nanguT profile image
nanguT in reply to Jofisher

Thank you. You've given me some directions to look in. :-)

Hi there. It is very hard in those early years and even harder now because of Covid. Once your grandson starts nursery/preschool there are processes to identify and get help for children needing interventions. I wonder if the key to getting help in your area might be via Speech and Language therapy. If your grandson is not meeting his speech developmental targets this is probably adding to the usual frustrations that two year olds get when their communication skills don’t match their developing emotions resulting in tantrums. Speech therapists can usually refer children on for Autism assessments if they have concerns. It might be possible for your daughter to self-refer to the service, otherwise her GP can do it. It might be an idea to have a recent hearing test before referral as this will be the first thing they ask about. Getting help is a bit of a postcode lottery so the best source of information is local parents who have a child with special needs. There are also lots of different Facebook support groups which can be a mine of information. x

nanguT profile image
nanguT in reply to SpeedyH

Thank you. :-)

Hi

I hope you don’t mind me responding to your message.

I appreciate that it can be really difficult to obtain help and support without a diagnosis.

As a Continence Sleep and Behaviour Consultant I have over twenty five years qualified experience in supporting all children, including children with autism, learning disability and complex needs in being successful with their poo, wee, Toileting needs, settling to sleep, sleeping through the night needs and investigating behaviours being displayed and identifying the underlying reason for the behaviours ie communication, sensory needs, environmental, dietary, pain and physical health needs to name a few and provide step by step advice, guidance and support.

Support is focused upon the individual child and their needs, as opposed to a diagnosis.

I have produced a series of FREE videos for families, providing support and advice, via my YouTube channel. Online courses, published book information, starter packages and direct packages of support are also available.

A FREE introductory telephone consultation call provides an opportunity to discuss your individual needs as a family and identify the next steps to helping your child and family to progress.

Feel free to view my health unlocked page, Facebook page, Instagram, LinkedIn for further information and support.

Help is available

Speak soon

Charmaine

Continence Sleep and Behaviour Consultant

My son started assessment for autism age 19 months and was diagnosed by 3. When do they plan to start assessments? The process is long.

Sadly even with a diagnosis there is very little out there in the way of support. My son is 22, everything has been a huge fight to get. Even at 19 we had to go to tribunal for his college placement.

Social services won’t do anything, it’s up to the health visitor or gp to refer him for assessment. That usually starts with a hearing test. Is he going to nursery?

Her best bet would be to be very vocal and “annoying”with the health visitor and to join groups on on Facebook and ask on forums for other parents going through the same. Things have changed a lot since we went through this process.

Charleycal68 profile image
Charleycal68 in reply to BenjiB

This is the same as us my son is 21 he was referred by health visitor to paediatrician when he was 18 months old and was diagnosed at 3 years and everything has been a fight school college luckily he is an independent traveller now so that's one less fight with transport to deal with

BenjiB profile image
BenjiB in reply to Charleycal68

My son is residential for 38 weeks. The placement is super expensive so getting funding was a battle but of course it was left until the last minute by the LA to refuse funding so he was at home with nothing for 7 months and cost over 30k in legal fees. Next battle will be supported living next year, I’m worn out to be honest. X

nanguT profile image
nanguT in reply to BenjiB

Thank you. This is the kind of picture we are getting - how you have to fight for every bit of help, made worse by the pandemic.

hi, the first step would be your health visitor who can use a CHAT to assess your daughteractionbehavior.com/mchat/

also getting her into nursery is vital as they can start a my support plan. Referrals should be made by the health visitor to speech and language therapy too.

good luck

nanguT profile image
nanguT in reply to nursenatalie

Thank you.

I am an ex health visitor and am really disappointed that your daughters HV has not been more proactive. She can refer to all other services for children not meeting developmental milestones and should also be able to undertake a formal assessment herself as part of the universal childhood screening programme. This is undertaken regularly throughout pre school years and your grandson should already be flagging up concerns. I think she should be pressing her HV to assess him and refer him to a paediatrician.

nanguT profile image
nanguT in reply to Lindypops56

Thank you. Her partner phoned social services this morning and managed to get across how stressful things are, and the social worker is going to have a meeting with herself, the health visitor and the family. We're hoping that something will come from that. Your suggestions will help them know what to push for.

We are going through the 'process' with my grandson. I have messaged my daughter in law and asked what exact route she went down. Here is what she says:

"Please comment for me. We are 2years and 2months. We have almost a diagnosis.

GP wasn't interested. I spoke to the Health Visitor on several occasions to get a referral. Speech referal came first. The speech therapist then got us seen by the pediatrician who is confident she will diagnose him but he is too young at this point. HOWEVER she has done referrals to all the teams as though he has a diagnosis to get him the support he needs early.

And if they aren't being heard, they NEED to ask to speak to a different Health Visitor. I spoke to a couple.

By the time my little one got his 2 year review (at 2 years 2 weeks) and met no targets, the HV then agreed he needed the support, but an earlier HV had already completed the speech referal for us and they had already seen him and referred him to the pediatrician.

I'm not a pushy parent. I hate that I'm having to be, but now we're in the system, the team are amazing!

Hope this helps.

Sam"

I hope you manage to get help. It is very frustrating and also being a grandparent we feel so helpless but being there for them is a big help. My grandson doesn't respond to his name but he loves alphabet and number songs and which help calm him.

nanguT profile image
nanguT in reply to craftygrandma

Thank you both so much. My grandson is very skilled at construction with all sorts of bricks and seems to enjoy being sung to but he doesn't speak at all or seem to understand words (although sometimes it sounds like he's trying to say 'mummy' or 'daddy').

Hi thereAs the family are based in Wales, you might want to contact the Wales Learning Disability helpline. You can call them on 0808 8000 300 or email helpline.wales@mencap.org.uk.

I hope this helps.

Kind Regards

Kieran

nanguT profile image
nanguT in reply to Kieran_Mencap

Thank you.

Try looking at the Autism Wales website

contact Cheryl Doneen ASD Childrens and Young peoples support officertel 01495 766967 e mail cheryl.doneen@torfaen.gov.uk

nanguT profile image
nanguT in reply to Boeing-747

Thank you.

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