3y 7m son with possible ASD? sorry it's a bit long.

[rag31]

Hi there

 

I just introduced myself on the other bit of the forum and am new to the boards. I have 4 children aged from 14 down to 3 and this post is about my 3 year old.

 

As a bit of back story - my husband was assessed for AS about 2 years ago and although had 2 of the traits/strands strongly he only has the third one mildly so no positive diagnosis was given, though we did get tips on helping our relationship so that was useful! My husband, dd1 (9), MIL and SIL also all have tourettes.

 

Out of the blue last week someone asked me if DS2 (aged 3y 8m) has AS. This set me to thinking about it again, and reading some of the info but I'm finding it difficult to come across age appropriate info for him so thought parents and people with AS on here might know more from personal histories iykwim.

 

DS2 also has something called EDS which we go down to Great Ormond Street to have physio for. (not that he will do it!) There does seem to be some correlation with EDS and ASD as there seems higher than usual percentages of people with EDS have an ASD.

 

So, onto his possible 'symptoms'. He couldn't eat or swallow anything with any texture or lumps until around 20months of age - he would gag on anything other than totally puree'd food. Since then around 75% of the food he eats is potato in some form. I have tried everything but this is all he wants to eat, with the occasional pasta, veg and fruit.

 

He has had speech and language therapy since he turned 2 because he has very delayed language. I would say he is at the level of a child about 2 years younger than him. He is also still in nappies at 3y 8m. I don't think it is because he 'can't' but because he 'won't'. He screams at the mention of coming out of nappies or using a toilet/potty.

 

At home he seems to me to be exactly like his brother and sisters, he is normally affectionate, funny and enjoys playing with them and chatting. He makes eye contact and talks and just gets on with things. When we go out it's a different story. He finds group situations stressful (he copes by pulling his eyelids! And has been a nail biter since finding his nails) and cries and screams to go home. He is extremely laid back and if another child takes a toy off him he just goes to get something else, or pulls his eyelids! He has never argued or fought with another child.

 

Sam has had the same childminder since 6 months of age. He is fine with her as long as we don't or she doesn't go on holiday - if he hasn't seen her for 2 weeks he freaks out about being with her and it takes ages to settle him again. Talking of holidays - we tried a caravan and he was up from 3am screaming hysterically about the noises outside. He seems petrified of going to sleep anywhere other than at our house and we have had many nightmare situations relating to this!

 

He seems to have short bursts of obsession, but difficult to tell if not usual as all toddlers have this I know. However he is coming up for 4 and will still go through weeks of watching the same film over and over again then 'going off' it. He has watched Space Buddies 31 times in the last 3 weeks (my dd is counting). Should he have grown out of this by now? I think my others had.

 

I don't want to subject him to any unnecessary assessments or doctors appointments as he finds the ones he has already very stressful and screams continuously til we leave. As he will be home educated I'm also wondering about the necessity of a diagnosis and would appreciate hearing others' views.

 

What I am wondering is if this sounds like a little boy with aspergers? Would anyone with AS or with a child with AS care to share with me their early history as I am finding it difficult to get info about pre-school aged children.

 

Many thanks,

Becky

[NickyB]

Hello again Becky. There are some things you mention which are similar to my boy when he was 3, like the delayed language and eating issues.

My boy is now 6 and has been diagnosed with high-functioning autism. His actual speech is very clear and his reading age is a couple of years ahead - but it's the comprehension and the use of language that's the issue (if you see what I mean ) He will repeat phrases from TV shows and films over and over again, and it's very difficult to engage him in a conversation without him using these phrases. He will also substitute his own words for the one he means and expect us to understand him!! He'll also add letters to the beginnning and end of words. It's not a speech disorder, because he knows what he should be saying.

Food is another issue, and he is very rigid about what he will and won't eat. We try to introduce tiny samples of new foods most days, and he is gradually beginning to try them. It's a very slow process, though. He did have probelms with lumpy food when he was younger, and still doesn't like any strong tastes.

His other problems seem to be linked to sensory issues - he can't cope with too much background noise or crowds. He has problems at school with being in the classroom, playground and dinner hall. He finds any change in routine or environment difficult, for instance if the classroom is laid out differently or someone turns up unexpectedly at the house. We have had problems on holiday, too, so now we get lots of information about where we are going, and pictures of the accommodation to show him before we go.

He has an obsession with cars, and other obsessions which change from time to time.

 

Sorry that turned into a rather long post I hope some of it might have helped <'>

 

Nicky x

[Sally44]

For a diagnosis of Aspergers a child has to have developed typical language up to age 3. So you might be looking at an Autistic Spectrum Disorder rather than Aspergers.

Alot of the things you mention (food problems, noise, toileting, doesn't cope well out of the home environment) could be down to sensory issues ie. Sensory Integration Disorder. He also seems to like routine. It is interesting that he has problems if he doesn't see his childminder for a couple of weeks. That might indicate other sensory processing difficulties because once a child has met someone and knows them they shouldn't forget them again or need to get to know them again. Or it might be down to changes in routine again.

As his speech is 'delayed' I would actually question the SALT and ask her outright to assess all of his speech and social interaction and play skills to tell you whether she thinks he is on the autistic spectrum. If she is not qualified or experienced to do so, then I would ask to speak to her supervisor and ask to be referred to a SALT that can do those assessments. A speech 'delay' means there is every chance that the child will catch up. However a speech disorder or difficulties associated with an ASD are for life.

In about a years time he will be starting school. He is going to struggle to learn or cope in that environment if his speech (expressive, receptive, comprehension, social interaction skills/play skills) are typical of someone with an ASD.

My son was first seen by a SALT who told me to expect a diagnosis of an ASD and who asked for my permission to refer him onto a communication clinic at our local childrens hospital where there are professionals who have experience of diagnosing ASDs. It took over 2.5 years to get a diagnosis by which time he was 6 years old and very unhappy in a school that was not meeting his needs and where he was not making progress. So I would advise you to get the ball rolling. I would probably put the SALT on the spot by sending her a letter of your concerns and asking them to assess and refer onwards if they have concerns. Afterall you do have a family history of ASD traits as well as other disorders.

[bid]

For a diagnosis of Aspergers a child has to have developed typical language up to age 3. So you might be looking at an Autistic Spectrum Disorder rather than Aspergers.

 

Just to clarify, Asperger Syndrome is an Autistic Spectrum Disorder. If there was significant language delay but no learning difficulties then the dx would probably be High Functioning Autism.

 

However, in some areas I understand professionals are increasingly using the umbrella term 'Autistic Spectrum Disorder', rather than specifying where exactly on the autistic spectrum a child falls. I have noticed this in the paperwork about the children and young people with whom I work.

 

HTH

 

Bid

Edited August 19, 2009 by bid

[Mumble]

Just to clarify, Asperger Syndrome is an Autistic Spectrum Disorder.

I was just going to post the exact same sentence! It's one of the (mis)understandings that really gets to me.

 

[justine1]

Hi Becky

Firstly this is my own experience,I also have four boys and my second son has Aspergers,most of what you describe sounds like how my son was at that age,except he was potty trained by two and could talk in sentences by 18 mths,but with the going out being stressful and he is happy at home this is how my son is and the part you mentioned about how he will just take another toy my son did this but not any more.

Secondly,as a mother of four you will know when something is wrong so always go with your instincts.

Thirdly,I know you say you dont want to put him through assesments and as a mum I completely understand,however it is very unwise to self diagnose based on other peoples experiences or online info,as peoples experiences really differ no autistic child is EXACTLY the same everyone is different,and some info on websites is confusing and misleading.So I would say take him to your GP and express your concerns then go for the assesments it is also important to get a proper diagnosis so he can get the help he needs.

Good luck.

 

[Sally44]

I didn't mean to confuse, although the 'labels' are confusing in themselves ie. ASD includes Aspergers, yet Aspergers is a separate diagnosis within the autistic spectrum (as there is a slightly different criteria for Aspergers) whilst at the same time being part of the autistic spectrum. But the criteria does say that the acquisition of speech is supposed to be typical up to age 3 for a diagnosis of Aspergers to be considered. And the lack of recognition of speech/language/social interaction difficulties for those with a diagnosis of autism/ASD (not including Aspergers) is one of my frustrations. And by that I am not saying that those with Aspergers do not have speech/language difficulties because they do. But their language difficulties are usually not initially so obvious due to the typical acquisition of language at an early age - and therefore difficulties usually become more apparent later on.

 

 

 

[rag31]

Hello again. Thank you for your helpful posts. He has a SALT appointment on Monday actually, with a new SALT person (the last one was absolutely rubbish, but it was at home so that helped) so I am intending to ask her. He also has an appointment coming up at GOSH at the beginning of Nov so if the SALT isn't any use then I can ask them about it. They are brilliant at referring very quickly.

 

I wasn't going to try to self diagnose (honest!), but I did want to hear stories from 'those in the know' before going any further down this route. Sam will be home educated so I don't have to worry about getting a diagnosis from a school point of view, thankfully.

 

Can anyone tell me what sort of help or services they got after a diagnosis? I'm thinking that the main thing is that maybe if he has a diagnosis then people will stop judging, which I am feeling increasingly. I think people think I'm crazy as I don't go out in the evening often any more (only I can put him in bed), he is still in nappies, often has screaming fits if he is unhappy and wants to go home etc. I get the feeling that people think *I* have made him like this :-(

 

Thanks again,

Becky

 

[rag31]

We have had problems on holiday, too, so now we get lots of information about where we are going, and pictures of the accommodation to show him before we go.

He has an obsession with cars, and other obsessions which change from time to time.

 

Thanks Nicky.

 

That's a great tip - I think it would probably help Sam. Hasn't occurred to me before. His comprehension is not brilliant but the pictures could really work I think!

 

Sam has also had huge obsessions with various modes of transport. He has been through minis, beetles, London black cabs, London buses (we don't live anywhere near London! LOL), Thomas (of course), currently it's British airways airoplanes and Diesel 10 from Thomas. (he has one in each hand as I speak <'> ).

 

Thanks,

Becky

[rag31]

Alot of the things you mention (food problems, noise, toileting, doesn't cope well out of the home environment) could be down to sensory issues ie. Sensory Integration Disorder. He also seems to like routine. It is interesting that he has problems if he doesn't see his childminder for a couple of weeks. That might indicate other sensory processing difficulties because once a child has met someone and knows them they shouldn't forget them again or need to get to know them again. Or it might be down to changes in routine again.

 

Afterall you do have a family history of ASD traits as well as other disorders.

 

Ah, I hadn't thought of them as being sensory issues. I always thought it's just Sam and his quirks

 

Sam doesn't forget his childminder, but I think it is the change of routine. By the second week after a break he is fine with her again.

 

Are ASDs genetic? I can't remember if i've read anything about that...

 

Thanks,

 

Becky

 

[chris54]

Are ASDs genetic? I can't remember if i've read anything about that...

It does seem to run in family's so there must be some inherent factors.

[Sally44]

Ah, I hadn't thought of them as being sensory issues. I always thought it's just Sam and his quirks

 

Sam doesn't forget his childminder, but I think it is the change of routine. By the second week after a break he is fine with her again.

 

Are ASDs genetic? I can't remember if i've read anything about that...

 

Thanks,

 

Becky

 

 

Some children/adults on the spectrum have something called prosopoagnosia - which literally means face blindness. They do not recognise people by their facial expressions and therefore changes in appearance ie. colours, perfum, haircut/hair dye etc can render a person unrecognisable to them. I read a post from an adult female who was at university who found it very difficult going home to visit her parents because she did not recognise them if they had changed their appearance in any way. So they used to send her photos or a video tape prior to her return home so that she could get used to their appearance. Obviously not everyone has this. My own son doesn't. Donna Williams (her website is www.donnawilliams.net) does have this and recognised people by their smell or how they moved. So someone with this would get upset if someone changed their appearance, and also if they did not see someone for a while because people do change (ie. buy new clothes etc).

The other possibility is as you say it is a change in routine.

I think most of these forums would agree that sensory issues play a major role in behaviours, especially avoidance behaviours, tantrums, frustration and anger etc. I went to a seminar where they recommended all parents to use sunglasses, a peaked cap or hooded top, DIY eardefenders to cut out the visual and auditory stimulation and allow them to take a small toy with them to hold. That did the trick for my son who previously found it very stressful to leave the house.

[Mumble]

Some children/adults on the spectrum have something called prosopoagnosia - which literally means face blindness. They do not recognise people by their facial expressions and therefore changes in appearance ie. colours, perfum, haircut/hair dye etc can render a person unrecognisable to them.

Understanding facial expressions / 'reading' faces and actually being able to see faces are two different issues (although obviously linked because if you can't make out the whole face you are obviously not going to be able to read it).

 

Prosopagnosia means, as you rightly say, face blindness. It refers to actually not being able to see the whole or parts of the face or not being able to see the face as a whole (i.e. you can see the eyes, you can move and see the nose, move and see the mouth but not see the whole face).

 

Face blindness (prosopagnosia) is different from understanding/'reading' facial expressions although the terms get confused as some people call the later face blindness (it is actually mind-blindness - the inability to understand what someone else is thinking from their facial expressions).

 

I have prosopagnosia and mind-blindness. As far as the prosopagnosia goes, in looking at people I find it very difficult to recognise faces and go by hair-cuts and colours, clothing, smell and shoes all of which I can see with no problem but all of which are changeable. I cannot describe what individuals look like (or myself - I do not know what I look like) or pick out people I know in a crowd (for instance when meeting my sister at one of the London railway terminals she has to come to me as I can't recognise her and would just as likely go up to a stranger with curly blonde hair and flip flops and give her a hug ).

 

As for mind-blindness, I can look at people's facial expressions (in parts!! - this is why prosopagnosia makes it even harder) or on photographs (which I can see) and not have a clue as to how they might be feeling, beyond an upturned mouth being happy, a down turned mouth being sad, an open mouth bing shocked and a red face being angry. Of course these don't always apply and there are far more nuanced expressions. I also can't combine aspects of an individual's presentation, i.e. how they're standing, what they'd doing with their arms, the tone of their voice (I can't pick out tones - I hear fairly monotonously and only differentiate quiet from loud - with loud meaning to me that someone is angry), what they're actually saying and their facial expressions. These are all things that someone without difficulties in these areas would, I assume process probably without much thought and almost instantaneously (I'm happy to be corrected, I don't know what it's like for people without such problems) and react/respond to appropriately in how they then dealt with the other person.

 

I hope that distinction makes sense.

 

[Sally44]

And the thing with face blindness or 'facial expression blindness' is as Mumble says. Very often (but not always) the person does have an understanding that there are facial expressions that give information. So it is not that the 'understanding' is not there. It is that the 'information' is not received via the senses of vision, or if they are received they are not processed accurately etc. And this appears to apply to many areas that autistic people struggle with. It is a lack of information, or inaccurate processing, or missing or incorrect connections of information etc that happens that causes the difficulty. And of course every individual has different variations and combinations of difficulties.

[rag31]

Hello

 

We saw the SALT yesterday, mainly for a follow up assessment to see if any further action needs to be taken. (It does). We discussed some of the other things mentioned above and she recommended that I go to the GP and ask to be referred to a Community Paediatrician who can look into these things further and make any diagnosis.

 

It was strange, we talked about Sam while he played with some toys. Then she wanted to see how he reacted when she talked to him so she asked him to help her to put the toys away. He immediately looked uncomfortable, stood up and put his hands over his eyes/scratched vigerously at the side of his head and didn't answer/help/look at her at all. I suddenly saw him through another persons eyes and thought 'oh my!'.

 

So, just wanted to know - is the community paediatrician the best person to get a referral to? Wiith Sam's other condition we had a nightmare being referred to the wrong person and being told he was making up his dislocations!! Or is someone else better to be referred to?

 

Does anyone have any idea of waiting times for an assessment? And any recommendations for private centres for assessment.

 

Thanks,

Becky

[Karen A]

Hi.The latest guidance suggests that the most appropriate path to obtaining an assessment for ASD diagnosis is to be seen by a team.There should be a team in your area with specialist experience.The team would include a paediatrician or child and adolescent psychiatrist, a specialist speech therapist and probably other professionals including perhaps OT,a representative from education and Social Services.Your GP should know how the team can be contacted.

Waiting times and the length of time for assessments does vary very much from one area to another.It is possible to to obtain private assessment.However some LAs do not have as much regard for private reports as for NHS assessments.So it may well be worth pushing your GP for an NHS referal first.

If the SALT works within the NHS they should be able to advise regarding the specific team who deal with ASD assessment in your area if your GP does not know.Karen.

[Mandapanda]

Wiith Sam's other condition we had a nightmare being referred to the wrong person and being told he was making up his dislocations!!

 

 

Who do these people think they are ?!!!

 

I believe gagging on food can be a sign of dyspraxia.

 

My youngest has never been good going to other people, even grandparents he was very close to. He was fine whilst he was with childminder/at school, but the parting has continually been a problem. Holidays just magnified the problem afterwards. My eldest has Asperger's and would go off with anybody when younger! I think it depends not only on diagnosis but their inherent personality.

 

You might look at information on the National Autistic Website, including info on Pathological Demand Avoidance (PDA) - my youngest is different in some significant ways to my eldest who has Asperger's and PDA is a related condition. However you may well be looking more at High Functioning Autism, but children can have other difficulties at the same time, eg. dyspraxia, adhd, and some of them have overlapping/similar symptoms. It can be very difficult to work it out for yourself.

 

Taking my eldest out into shops was such a problem, I gave up for many years. I would go to town when my husband could look after him. When he got older and wanted to go to town to spend birthday money, he became much better, would hold hands, stay with us (mostly), etc. So things can get better as they get older.

 

Support after diagnosis can be extremely varied depending on your local services. Pretty hopeless where I live, unfortunately

 

Good luck.