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Is this autism or something else?

Tic

Hi there!

please excuse what is probably a topic already done to death by many other people here but my middle son, Jake, is currently under investigation for possible ASD and has been for the last year. He is 3 with the following things which were flagged by specialists at various stages:

  • little language (he has echolalia - both immediate and delayed)
  • very aggressive
  • obsessive behaviour
  • cannot play with others
  • cannot play with toys
  • spends most of his time looking at things very closely
  • throws stuff
  • screams a lot
  • cannot follow instructions at times
  • does not understand most of what is said to him
  • shows no interest in others
  • obsessed with motion such as vehicles, water pouring, sand timers etc
  • reacts violently to controlled environments where he is not in charge
  • eats very little - incredibly particular about foods and if they touch each other
  • can only express wants/needs - does not engage in two-way conversation ever
  • cannot count or respond to questions
  • does not recognise his own name at times
  • cannot distunguish people in photos
  • cannot distinguish between people with similar hair e.g. every blonde girl is "elle", his sister's friend and everyone with dark hair is his sister
  • has to do things in a particular order and gets very upset and violent if this does not happen
  • will tolerate the dentist but not doctors, nurses, hair dressers or having his shoes fitted
  • has no concept of safety - either his own or other people's
  • does not interpret emotions in others
  • harms self regularly

That list is not exhaustive but I figured it was long enough to start with. We've been to all different kinds of people (most of which say they don't know what to do or how to help him as he's so uncooperative) and I'm waiting on the local psychology team to meet him later this month and hopefully make some suggestions as to what, if anything, is wrong with him. Does this sound like ASD or something else entirely?

I don't know - no one is really saying anything definite but they keep throwing autism out there as the only option they are considering. I've got no problem with a diagnosis being made, it's more what if there is nothing wrong with him and I'm stuck with a lovely but very limited little boy who may not improve ever. Either that or I've dropped the ball completely with him and I'm a terrible parent... Cry

  • Can't believe you have been waiting a year. That is shocking particularly when early intervention is known to be very effective.  For me appointment with GP to final diagnosis took about 10 weeks.  Perhaps we were lucky! Most of it seemed to be about what we told them anyway rather than observation because my son is fairly uncooperative as well. Much of what you say sounds like my son but Jake seems to have better language and worse meltdowns. 

    In case it helps, stuff that has helped us:

    Understanding that he is not being bad or difficult, some things are absolutely unbearable for him, gloves, doors left open, sudden changes in direction, etc etc even if they seem trivial to me.

    Trying to structure his day so he knows what is coming and giving him lots of warning when things are changing. Is it bath time, Is it bath time for about 5 minutes before I expect him to get in the bath. Typically processing is slow.  Parts of the brain don't communicate well with each other.

    Letting him do the things that make him happy, as long as he isn't in danger.  My neighbours may not like all their gates being closed at 730 in the morning and it may take ages to get down the road but I pick my battles, this one doesn't come close to being something I'm prepared to fight over or risk his distress.

    We have only a few rules which we are really strict about. Eg  He cleans his teeth. Because for him tooth decay would mean a general anaesthetic.  This took 3 months.

    We try to focus on one or two things at a time, the most important things

    I would try to get in touch with other parents in person as well, perhaps through a local NAS group.  It is SUCH a relief to meet other people that don't make you feel as if you live on another planet.

  • You say he doesn't recognise his own name at times. Can he actually in general, hear with no problem?

  • hi again - I was a single parent for 7 yrs.  Apart from nursery + then a school for children with autism, I could feel very isolated.   Looking back I think I got more without fighting than a lot of parents do now.

    If you have people around you who are unsympathetic to your situation that can be worse in a way because it creates more upset.  You need support.  In my opinion, to be blunt, people who say it's the terrible 2s, or your child is naughty/spoilt etc are totally misreading the situation.  Yes, to those who haven't a clue about asd, that's how it looks.  Then you've got them to deal with as well, or not.  Take it from me, it is such a relief when you talk to people who understand autism.  You get so used to talking to people that don't that in a weird way you almost get used to it.  But when you're with someone who really knows + understands + clicks with what you're saying + is sometimes ahead of what you're saying, then you can feel all the tension evaporating.  At the moment you're in limbo, waiting for a diagnosis (or not), not getting enough support, blaming yourself to a degree, torn between different opinions.  I hope you don't mind me saying that, as it's meant kindly + from the heart, because I've been there myself at times.  You will get support on this site because people will understand.  As you say, a diagnosis of asd is something you can cope with.  I think a parent knows when something's not right.  I did with my son from a few weeks old, altho nobody took me seriously.  2.5 yrs later he was diagnosed with autism.  Trust your instinct + your intelllect.  You are doing your best in a difficult situation, should hold your head up high + stick to your guns.  Hopefully the diagnostic procedure will soon be over + you'll know.  Then you'll have a direction to go in.  Your big worry (it seems to me, sorry if I'm wrong) is that there'll be no diagnosis + you'll be left with the situation you're presently in.  I can understand how upsetting that would be because you need a way forward from that.  Professionals take a long time to diagnose asd because they want to be absolutely sure, so won't say anything until they've gone through loads of stuff, even if they know quite early on.  Quite rightly they don't want to misdiagnose.  Hang in there in the time-being.  There will be lots of people on these boards who are concerned for you.  Keep on posting whenever you want + please let us know how things turn out.  bw 

  • Hi Pigeonjumper,

    Sorry to hear you feel you are dealing with all this on your own. Given the number of people involved with your boy as well as the issues you are dealing with I am not surprised you feel in need of of a moan! You have certainly not dropped the ball with him – you have got him (and you) well on the way to getting the help you need. I don't have much advice, my dd is not diagnosed, just want to lend and 'ear' and say good luck with the assessments. I am not sure the struggle and the stress ever ends, but a thorough assessment is a start, to reveal the issues and move forward. I suspect it will also help to get your OH on board so you can get a bit of support and feel a bit more of a team? Let us know how you get on. You are doing the right thing, keep going and keep us posted.

    Handywomanxxxxxx 

  • hi pigeonjumper.  You say they keep mentioning autism as a poss diagnosis.  This cd because of the behaviours you mention in your post.  It can take quite a long time to get a diagnosis, so it's a stressful.  Please don't think you're a terrible parent.  There is a genetic component to autism + you couldn't have done anything about that.  Just like I couldn't.  Being a parent of a child with autism can be very difficult.  I've certainly felt inadequate, tired, angry, confused, depressed etc.  But as you learn more + more about how asd affects your child, then you realise how difficult life can be for them.  It sinks in that however stressful it is for you, it's worse for them.  This is where "the behaviours" come from.   Have you seen a paediatrician?  In the meantime it might be helpful to research this site, in case an asd diagnosis is confirmed later.  Being a parent of a child with autism means you have to change the way you think and, consequently, behave.  It may not appear this way at present, but you are the most important person in his life, even if he doesn't realise it yet.