DN (3.5) diagnosed with autism but Ssis receiving no help in understanding what this means

[dirgeinvegas]

I apologise at the start for my post, I imagine I may ramble a bit but I don't know what's important to say and what's not. I am posting on behalf of my step-sister really or perhaps my nephew.

He is 3.5 and was diagnosed in January as autistic. She said he saw a paediatrician, a speech therapist and someone else over a period of about 4 months. She believed he was going to be diagnosed with a speech delay and so is very shocked that they have told her is autistic. She said the nurse told her "we usually have a leaflet that we give you but we haven't got any today so you'll have to go on X website instead".

I saw them both last night when they visited our parents. DN had a tantrum about something and sat screaming for about an hour. His parents and my parents left him to it saying he was just being a "naughty 3 year old looking for attention" but it didn't seem like that to me. I don't know, maybe leaving him is the best thing they can do but he was so upsetting to see him so upset.

DSSis says that she has no idea what to do. She is going on a course in May to help her handle him and is applying to get him some 1-2-1 support so that he can attend mainstream school.

DSSis says that she can't believe the diagnosis because:

• they told her he doesn't make eye contact but he does. She told the doctor he makes eye contact at home and the doctor said she couldn't be sure he wasn't looking past her.
• He's affectionate and she believes that autistic children aren't affectionate.
• He can count from 1-30 and backwards and pick out the numbers in between if asked. The nurse told her he'd just learned them by rote.

I don't really know what I am asking, I suppose just for someone to direct me to some information which might help. DSsis and I don't get on particularly well but after seeing DN so upset last night I have to do something.

God my post reads horribly. Sorry!

I should say I don't know how true her beliefs about autism are. They are just her reasons for disagreeing with the diagnosis.

They also said he's too young to say where he is on the spectrum which she says is another reason they may have jumped the gun and DN might just have a speech delay.

Dirgeinvegas, I'm sorry but I suspect the DX is probably correct. Developmental paeds and speech therapists are reluctant to DX something so devastating for parents without being sure. It is perfectly normal to go through a (sometimes long) phase of denial.

Children with Autism Spectrum Disorders (ASD) can be affectionate and can give fairly good eye contact. Sometimes they may only contact the eyes of those they are familiar with.

Your DSSis needs to have time to come to terms with this and read up about it. The NAS website is good and they recommend lots of books. This isn't a death sentence, though. My DS was DX at 3.5 and he's just coming to the end of mainstream primary school, expected to do ok in his SATS and will be going to MS secondary. He achieved this with a lot of support from a statement of SEN which gave him a 1:1 TA. He went to a special preschool where his speech and understanding was helped to develop.

Your DSSis will come around. Just be supportive, not dismissive of the DX but let her come to terms with it in her own time. He's still your lovely DN and her DS. He hasn't changed and he needs your love and understanding all the more.

In my experience all children on the autistc spectrum are different, they are good at some things and not so good at others.

It is possible that your DN makes eye contact at home because he is very familiar with the adults around him.

It is a myth that autistic children aren't affectionate I have 2 Dd's who I believe are on the spectrum, one is not affectionate at all the other is all over me like a rash!!

As for the counting I would say that it is quite common for autistic children to be interested in numbers and counting up and down whether it is learned by rote or not is something that lots of autistic children seem to enjoy.

He probably is too young to place on the spectrum because nobody yet knows what he will be capable of when he learns to communicate.

FWIW and this is only my opinion, I think that even though your Ssis has been treated badly by these people, they have been assessing her son for 4 months and have now reached an opinion of what his difficulties are. I think she would do well to do some reading and research his condition because he needs her help and support.

Hope that helps.
I

sorry cross posted with ellen.

We're singing off the same hymnsheet, Ineedalife.

Thank you both so much. I will have a look at the website and print some info for her. I am not sure if I can tell her that the dx is correct, do you think she'll come round on her own?

Also, was there anything they could have tried to calm him last night? It was horrible to see him so upset for such a long time and be ignored. If it has been my own DD I would have cuddled her although I get that cuddling him might not have been too easy - he was throwing things around the room.

Have a look into whether Earlybird courses run in her area. They are for parents of newly diagnosed children and are fantastic. They really help you to understand just what it is that your child has and how it impacts on things.

It may be that he was just totally overwhelmed and went into meltdown last night. Too much stimulus, changing activity too quickly, not knowing what he was doing and when could have caused it. My DS will meltdown if just one thing changes about his day that he isn't prepared for. When it happens the only thing we can do is hold him and let it run it's course. It sometimes means we have to get him home, or somewhere he feels safe but it is almost like we have to re-set him.

Yes, chocoholic that's the course she's doing in May. I will tell her it's really good. I think that will reassure her a bit. I suppose they'll cover things like the screaming tantrums etc on the course will they?

They cover everything and if there is anything in particuar that she is finding hard, they are great for offering advice and tips.

They will help her understand that he isn't having the tantrum because he is being naughty but because of how he sees / hears / feels the world and how to make life so much better for him.

How awful for your sister, she has just been left to it :(

I was lucky that we were able to access a pre school group for toddlers with ASD just after DS2 was DX. Maybe look on the NAS website to see if there are any in her area, or she can ask the SALT, as the group I went to was run by the SALT and EP.

It ook me at least a year to come to terms with DS2's DX, you grieve for the child you thought you had.

Oh, and DS2 makes fair eye contact and is affectionate, sometimes a little bit too much.

Wishing her lots of luck.

It's a really useful course, dirge, I went on it years ago, and other families are there going through the same thing, great mutual support. Lots of help in dealing with problem behaviours, looking into the underlying causes of the behaviour and understanding how children with ASD sense the world, which helps with knowing how to deal with them.

I don't think you can tell her you think the DX is correct. She doesn't want to hear it ATM, but just be supportive.

Hi there, just wanted to say that my ds who is now 5 (asd) would have tantrums that would go on for 2 hours. There was nothing that me or DH could do except ignore it. He wouldn't let us anywhere near him. He has now grown out of it (still has his strops but only lasts for 5 mins or so). I remember what a difficult time it was for us but it does get easier. There should be portage available - we had someone who would come 1-2 times a week to play with ds. He was an angel with her of course!

There is a really good book that might help too.
10 things every child with autism wishes you knew

We also did an Early bird course, which I felt was really helpful. We have recently done the Earlybird + one as well, which fouses on school.

When a child is having a meltdown you can't really do much to intervene because they can't usually process language and what you do could just make things worse. They are best in a safe place where they can't cause too much damage to people or property until they are calmer.

Once it's over they still need to understand that this behaviour isn't acceptable because they will grow up in the real world and have to find other ways to deal with their anger as they grow.

There is lots of support to be had on this board and also on the ASDfriendly forum - just get her to Google it.

If she feels after looking further into ASD that the diagnosis is incorrect she can raise it and it can be reviewed. This is not a permanent label.

What she needs right now is someone non-judgemental to help her get her head round the future she's just discovered. it can be a rocky road at first even with a supportive family so it's good that you are there for her in this way.

Hi Dirge, My DS aged 3.7 was dx 4 weeks ago today. He is ASD, has speech and language delay. Is affectionate, very kissy and cuddley, will do eye contact-but only on his own terms and when he wants to. He can also read and count way past 100-it's to do with the way his brain is wired. He also has meltdowns if he doesn't get his own way so I sympathise with that one.l We have just been reading books, we have been offered an earlybird course which will be in sept, but during the day so don't know if we can go as we will be at work. Does he go to a nursery? If so there should be a SENCO, or specialist early years service who can start the statementing process so he can start school with support. Mumsnet has been the best source of advice, encourage her to come on here-I have learnt more from here than any other source. Your Ssis is probably feeling devastated, and an emotional mess, I know we are, but it's going to take time to come to terms with it, and families also need to learn that is it not your nephew being naughty-the number of times we have heard that one! Just be there for her, and help her with whatever you can, she may not want any help and she may not want to talk to anyone-I know I don't.

Dirge she should have:

1. A keyworker who will help her negotiate everything she needs (but despite this being recommended years ago many areas don't have them yet)
2. The speech therapist should be visiting and providing direct speech therapy - someone needs to ring the speech therapist and ask for them to come and put a programme in place. You might not believe this but if you don't ring them up they don't ever show up
3. She should be able to access portage / early years service. Portage should visit weekly or twice weekly and show her techniques. Alternatively if in nursery / school there should be an autism outreach team which the paed should have referred to. She can self refer.
4. She can apply for DLA / Carers Allowance - have a look at Cerebra website and Contact a Family for info and CAF have lots of leaflets on support.
5. She can if she wants contact the Disabled Childrens Team of social services and ask for an assessment for a disabled child and a carers assessment for her. Not everyone wants to do this. It might mean she can get some direct payments to pay for some help. However you need to read up leaflets eg on CAF to see what sort of things to ask for. You need to be primed to get something out of SS.
6. She can ask for an educational psychology referral to help advise about schooling - again she can self refer - via the council.

You will find that you only get help if you make a nuisance of yourself.
She should get a diary or notebook and write down what she does and who she speaks to and what was said as you have to chase up everything. services are often poor and overstretched.

Some areas have Health Visitors who specialise in special needs. She could ask the GP or her HV

She can also look at the Council website /contact Parent Partnership to ask about suitable schools. there may be schools which have ASD units etc (not always in the school you would have chosen), sometimes schools at the rougher end of town actually have more experience and a better attitude to extra needs so its worth looking around. She can also look at special schools if that is something she is interested in. It depends on the severity of the ASD though as often its hard to access anything other than mainstream until the child is deemed to have failed.

A good book to start doing positive things yourself is Hanen More than Words - shop around for a good price - there have been threads on here before. It will give some ideas. The earlybird course is based on Hanen. I didn't find earlybird that useful although meeting other parents was brilliant. It had some ideas but you don't walk away with the knowledge you need to really make inroads into a child's difficulties.

Some childrens centres have drop in speech clinics or portage sessions and she could go along.

I have three children and parenting my autistic child is totally different and often counter intuitive to parenting the other two. It is hard work and you often feel lost, especially at the beginning and the behaviour can be a real issue as often they don't respond to normal discipline techniques. Even those of us who have gained lots of knowledge about ASD can still find it hard to deal with behaviour. Often it comes from fear eg of change / unknown or from frustration eg not being able to express needs. Using pictures to support speech / help the child make choices can help.

Also don't underestimate how big a shock it is - she will be grieving for the child / future she thought she had and which now probably feels as though it has disappeared.

Early intervention is really important so she needs lots of help and support to find the right help and information.

Most areas will have a local support group eg NAS (also look at NAS website) where she can meet other parents.

Often its good to take one issue at a time and look on here for past threads or post your own and also if you want to ask about schools etc in a particular area if you start a thread on this usually someone will usually comes along who knows the area.

Being a babysitter for a night so they can get out by themselves and just take it all in / have a good cry away from the children could be a way you can help.

Try not to judge her parenting. she will get enough of that when she is out and about and her child eg throws a tantrum in a supermarket and everyone stares. Expect it to take a while for her to find her feet.

Gosh, Agnes. I want to cut and paste this for future reference. What fab and complete advice.

Another one to say DSS must must must get in contact with the NAS. My local support group is superb with interesting speakers and useful mum to mum advice and hugs. It also runs events at local soft play areas etc and a lending library on ASD resources

My area doesn't run a early bird but the Early years SEN team have just run a 8 week course that has been superb, working though lots of stuff challenging behaviour and sensory problems. (could this be the reason for th screaming last night?) Again these can be tracked down through the NAS.

Also search parentlink (normally only deal with school age) but they can sometimes help completing the the DLA forms.

Try Makaton (ask at local sure start), Makaton is a form of signing and will also give a comprehensive guide to communicating using pictures. DS talks but makaton gives him an alternative when he needs it, and as he's getting bigger and picking him up isn't going to be a option forever, the pictures are becoming more useful in help me get him moving.

recommend DSS comes on here, it's fab even lurking I get so much good advice and practical help.

FWIW (3, 4in june) ds is very autistic, does do eye contact (but not always) and is very affectionate. (although he bites and hits out too)

Just reread your message. What you were actually asking was what it meant.

you can get the official definition from the NAS website and I can't tell you what it means for other people. But for me autism means that DS thinks differently from the way most people do, is motivated in different ways and will be concerned and worried about different things. For me it's like a layer that sits over his normal character.

DS oftens only focuses on one thing at once and, if what you trying to do or communicate doesn't fit in with that he can't process it.

He gets into situations that he doesn't have the social skills to negotiate out of and may resort to violence (e.g. trying to pass a child on a climbing frame).

He has sensory difficulties to do with hypersenstivity to do with personal space (propreceptive), and is other weird under and over sensitivities with other stuff. He hand flaps, tip toe walks and spins around in circles. everything else that can possibly spin spins too.

He will go to Special School in September. he may or may not stay in special needs school all his school life. Nobody can give me a long term prognosis, because noone knows how he will develop or what interventions will become available in time or how improving general understanding will help. He will probably have significant care need through his life, but that isn't the case for every child.

He may scream through the first time he doesn't something, but with the right support, we'll probably get there on the second, third forth... etc attempt. e.g. 45mins to get into a swimming pool is not a disaster as long as we get there in the end.

BUT

He is still my gorgeous boy and is ever so cute, (even his autism conspires to make him even cuter.)

I don't know if that helps at all.
x

sorry for the delay in coming back to this.

The advice on here is excellent, Agnes thank you so much for taking the time to type out all those steps. I think they will be a huge help, exactly what she needs.

I am not particularly close to dssis (am quite surprised she spoke to me about it at all) but I am friends with my BIL on Facebook so I think I will email him the info from the thread.

Lunar my DN is adorable too. Very affectionate and engaging, his dx hasn't changed how the family see him but I can understand how it changes everything for my dssis.

Thank you all so much, I will point her towards MN too. x