Gransnet forums

Ask a gran

Autism and 2 year old

(50 Posts)
grannyactivist Fri 15-Apr-16 00:19:38

I know lots of grans have first hand experience of autism and wonder if anyone can guide me through what happens during and immediately after assessment and diagnosis.

I have a young female student who has a two year old daughter. I teach the mum English and I'm 'grandma' to the little one. (Mum has no family of her own in this country, but extended family on her husbands side - none of whom live locally.)

I recently contacted the Health Visitor (with mum's permission) because I have concerns about the little one: she has no speech at all - her only sound is humming (or crying), nor any non-verbal communication, she doesn't answer to her name, eye contact is negligible and she doesn't engage in any meaningful play.

The HV knows me from previous contacts with regard to other students and has kindly sent me the appropriate Ages & Stages Questionnaires to fill out with mum and the little one, which I did today. As I suspected, all the indicators point towards there being immense developmental problems and I fear very much that the outcome will be a provisional diagnosis of autism. I'm seeing the HV next week with mum and dad (he's considerably older than mum and has children from a previous marriage so he knows there is a problem with the little one's development). Mum has a lot of potential support (she's muslim although all her contacts locally are with the church community), but I don't think has begun to grasp the severity of her daughter's difficulties yet and will find it really hard to manage the level or intensity of help she may need to give her daughter.

What I want to ask is this: after assessments how is a diagnosis arrived at? Will there be a referral to a paediatrician for further tests? What can be done to help the little one in the short term, for instance will she get speech and language therapy? Were services offered or will we need to fight for them?

I may be coming back on here again as things unfold. sad

durhamjen Fri 15-Apr-16 00:45:15

Depends on where you live.

If you go on this site, it gives up to date information. and there is a helpline.
I would read up all you can first because many people do not know much about it.
The earlier it is diagnosed the better for getting help. Quite often parents try to deny it, and then it's more difficult once the child is in school.
Even if it is diagnosed the parents still have to agree to have help.

My grandson had speech and language therapy through the council, but in many areas it has been privatised now.

Wendysue Fri 15-Apr-16 02:28:16

Sorry I don't have any answers for you, GA. Just lots of sympathy and (((hugs))).

How kind of you to take an interest in this young woman and her child! The world needs more caring hearts like you, that's for sure!

hildajenniJ Fri 15-Apr-16 09:16:23

My DGS lives in Scotland. He has been having speech and language therapy since he was two and a half. To begin with, the therapist was puzzled, as he has all the speech sounds, but wouldn't talk. She more or less gave my DD the diagnosis of high functioning autism. He still has speech therapy, he's six in June. He speaks now, but only say half the word, and is very stilted. According to the speech therapist, until he realises that the problem he has making himself understood lies with him, and not others he probably won't progress much more.
I'm sorry I can't be more helpful, I seem to have strayed somewhat, and have talked about my DS without giving any advice to you. Good luck with everything.

grannyactivist Fri 15-Apr-16 09:37:10

Thanks for your responses. I've got some time today to start researching on the net, but would still value other people's experiences.
Dad has lived in the UK for decades, but mum flew (!!!) in only three or four days before the baby's birth and her English is quite poor, although, unusually, her confidence in speaking is very high. They know something's isn't right with the little one and are both trusting me to help them, but I think dad especially is going to be shocked if my concerns about autism turn out to be well founded. I haven't yet talked to him directly about it yet.
I'm really pleased that the Health Visitor is so positive about me working with her and the parents to get the best outcome for the child, I know some professionals would be a bit hesitant.

ninathenana Fri 15-Apr-16 09:47:34

I would be suspecting the child is on the spectrum.
However, I would also ask for a hearing test. I hope you can help this family.

Nana3 Fri 15-Apr-16 10:02:40

From my experience with GS there will be other health checks, done through blood tests. Then the ball will start rolling depending on what, if anything, is found.
I am filled with admiration for your work ga.

rosesarered Fri 15-Apr-16 10:50:37

Our DGS was about 2/3 when he had a firm diagnosis.He had to attend hospital appointments over a series of four days, where various people talked to him ( no answers!) and tried to engage in play... Well, that's what it looked like to us, but what our DGS did or didn't do spoke volumes ( to them) and they were all agreed eventually on high achieving autism.So, he was on the autistic spectrum and the next milestone was to get him statemented ( he has to have one, or DID have to have one, not sure about now) to access the right kind of education for primary school.It took a while to get any speech and language therapy, and when he did, he would not co-operate anyway.
Actually, because they don't speak does not mean they cannot speak, and once he decided himself it was time to speak he became a chatterbox.His speech was not all that good, although his vocabulary was really good, and it took until he was about nine for his speech to be fully understandable by all.Patience is the name of the game.It will be a fight to access the right education for her, in answer to your question and a normal school is entirely wrong usually ( they end up in a corner with a TA.)You have to be prepared for a fight, but be polite and reasonable at all times to get what the child needs, above all to have the time and ability to keep on and on!
A lot of Asian families ( Muslim or Hindu) regard it as shameful and will be in denial over it, ( we know some) also even some white British people are also ashamed ( yes, even these days!) They say that he or she will 'grow out of it'.
Reading up on this subject, as djen says, is the best way forward, we have learned so much over the years and are able to find strategies that work ( when you want co-operation from the child or to calm them.)
Acceptance by the whole family is a good start though.

grannyactivist Fri 15-Apr-16 13:44:41

Thanks roses - that's really helpful to know about timescales and details of what happened to get a diagnosis. The family are Asian Muslims, but I think (hope) they will be more concerned about getting help for the child than worrying about the shame (!!) of having a child who has additional needs.
I did spend this morning doing research and I'm hopeful that if the little one gets a speedy diagnosis there's a school nearby that (I hope) will be just right. One problem is that behavioural interventions that rely on parental involvement are probably not going to be helpful as mum has such a limited grasp of English that it's going to be impossible to teach her how to intervene and dad is running a small business and is unlikely to have the time or energy.

Kittycat Fri 15-Apr-16 14:06:03

It's wonderful how they can diagnose children at such an early age now. It took us until our son was seven to be diagnosed as having Aspergers Syndrome-he's now 21. Although some people don't like their child to be labelled, it can help them to access other things they need. I would suggest that you search for local groups such as the National Autistic Society or as we have Autism Anglia. Obviously depends where you live. They can give support for the family and help with advice for all sorts of things, such as childrens groups, benefits they are entitled to for the child etc. You are very kind to be helping this family, they will certainly need it. We try to spread the word that our children are just a bit different and often all they need is people to be a bit more patient.

ninathenana Fri 15-Apr-16 14:34:41

roses I was interested to read that your GS now has understandable speech.
Our GS was virtually non verbal until 2.5-3 he communicated with Macaton (sp) he was being seen regularly by SALT but they have given up on him sad he is just 4 and now has a very good vocabulary but is hard to understand even for those close go him, and gets frustrated when we have to ask him to repeat himself (who wouldn't) I take hope from your GS that as he gets older his speech will improve.
D has been told by professionals that he is most likely on the spectrum but as yet there is no confirmed diagnosis.

Anya Fri 15-Apr-16 15:48:08

GS1 (9) has never been diagnosed with anything. He did 'talk' but only his parents could understand him. Gradually from about 4 he started to improve and now speaks clearly - but only about the things that interest him (Star Wars, Dr Who, nature, his puppy, etc) and only to people he knows and trusts.

He has no friends at school, never has had - when asked who he liked/admired most in his class he answer 'Miss X' - his teacher. In fact he was bullied by an autistic pupil, but mostly the other children leave him alone and just accept him as he is.

He can get very excitable sometimes and repeats phrases or sounds continuously until called to stop. This doesn't seem to happen at school (nothing there to over-excite him?) but when he plays with his brother (5) and his girl cousins (6&4) - the only children he does play with.

He is a bright - average student, but with amazing general knowledge and recall of facts. He hates football and any team sports. He takes his reading book into the playground at lunch and playtimes and won't interact with the other children.

I suspect he has characteristics of autism but possibly not enough to warrant any intervention, and you really can't force a child to make friends, can you?

hildajenniJ Fri 15-Apr-16 16:42:16

Further to my earlier response, I would say that my DGS 2 was a silent toddler. He would sit and play happily all by himself with a cardboard box, and never make a sound. He had none of the babble of his siblings. We knew he was intelligent because he could follow quite complicated instructions, he still can. He used to ride his tricycle round a square patio in the garden, following the grid of the slabs. He would do this for hours on end. If the small girl you know is anything like this, then I'm afraid that autism is fairly likely.

grannyactivist Fri 15-Apr-16 17:13:01

hildajennij, not only does this little girl not talk, but as yet she doesn't engage enough even for an instruction to appear to be 'received'; if it weren't for other signs of developmental delay I might imagine she was completely deaf. A hearing test will be requested asap just in case, but the lack of non-verbal communication would indicate it's a wider issue than deafness.

I have never come across a child of this age who has simply got no communication ability before and at the moment I can't imagine how she can be helped because there's just no engagement at all. I'm dreadfully upset that I didn't spot anything sooner, but dad looks after her when I'm teaching mum and often the little one was asleep or in her pushchair when I've taken mum out for a coffee. It's only since I've been going with them to a mums and toddlers group that I've realised there is a problem.

TriciaF Fri 15-Apr-16 17:56:04

Does the child use eye contact at all? If so you could try getting a response that way - change of expressions, objects of different colours etc.- does she reach out for them?
Or using the tactile sense - does she respond to strokes on the cheek, hands holding etc.
I have come across a very small number of babies (because that's what she is) who seem to be completely lacking in every "normal" response, and they do exist, sadly.
What about very basic things like feeding and toilet training? Is she still sucking?

harrigran Fri 15-Apr-16 18:21:56

Before looking for a diagnosis of autism I would be asking myself whether the child was actually being stimulated at home, were they being talked and read to. Not everybody gets down on the floor and plays with babies. DS was surprised when he saw me lie on my tummy and start babbling to a baby just six weeks old, but interaction starts at a very young age.

Jalima Fri 15-Apr-16 18:56:11

That's a very good point harrigran
I have come across young mothers who were completely silent when 'dealing' with their babies.
often the little one was asleep or in her pushchair when I've taken mum out for a coffee.
And some were left strapped in pushchairs for most of the day.

If she is 2 she shouldn't be asleep in the day except for perhaps an hour's nap.

Is Mum depressed or feeling out of her depth in a new country?

rosesarered Fri 15-Apr-16 19:03:17

Hopefully you will be able to help a bit grannyactivist as not speaking English will make things even more difficultfor the Mother.🍀

harrigran Fri 15-Apr-16 19:05:42

My 2 year olds were never asleep during the day but I do see families where they are happy to put a feeding bottle in the baby's hand or dummy in the mouth and leave them in a buggy.

rosesarered Fri 15-Apr-16 19:07:28

Anya could be autism or Aspergers, but if he is able to cope with a normal school that is a good sign.However, he may be mixed up and angry inside, and not understand why he feels different.If if were to be diagnosed, he may be relieved to know why, the family could read up on it, to help him,and if he were to need any extra educational help,it would be forthcoming.

rosesarered Fri 15-Apr-16 19:13:15

ninathenana yes, hope your DGS will improve, we thought it would never happen but it did in the end! Some children will benefit from the speech and language therapy, but our DGS would not co-operate ( he was scared) and he came to hate it so much they stopped it.His family, including us, talked to him all the time, which is why he had a good vocabulary, but as you say, it's making others understand what he is saying that is the problem.

hildajenniJ Fri 15-Apr-16 19:32:01

My DGS 1 who was diagnosed with Asperger's syndrome when he was 5 was tested for deafness. He was a fairly late talker and disliked the wind in his ears. He isn't deaf, he has perfect hearing, it's the sensory problem with his ears.
Anya my DGS 1 also has echolalia. He has a huge vocabulary, is very bright, but has trouble with social interaction.

Mamie Fri 15-Apr-16 19:42:48

I think from the description that this could be autism, but with that level of developmental delay that it could also be several other things. I would think the GP / paediatrician route would be appropriate at this stage.
My GS has the classic "triad" of AS symptoms; problems with communication, problems with socialisation and repetitive behaviour, complicated by the fact that he is bi-lingual. He is doing well in mainstream school (Spain) with a huge amount of support from home.

Iam64 Fri 15-Apr-16 22:01:22

Mamie is right to say a referral to paediatrics is needed. It does sound as though this little one needs a full paediatric assessment

grannyactivist Sat 16-Apr-16 00:33:11

I am quite certain that the very good Health Visitor will refer the child for specialist assessment - I just hope there's not a long waiting time before she's seen.

As for stimulation at home I can't fault mum for trying; she chats and sings to her with no response, but keeps at it. Now it is truly impossible (I've tried) to read a story to, or in any way engage with the child in any meaningful way. Mum cuddles her when she allows it and talks/sings to her very often - she obviously loves her to bits. The little one seemed to be developing normally and was responsive until she was about 9-12 months and then she stopped babbling; she has never managed anything resembling a normal sleep pattern. The child is also a very picky eater with a very limited number of foods that she will eat - even though the first thing she does with most other things I'd put them straight to her mouth.

Mum is actually a very positive person with a lovely sunny personality and enjoys meeting new people and is making friends - I would say she's far from depressed. Although mum and dad are Muslims they've been befriended by a number of people from the local church and mum in particular is welcoming the support she's getting.