why would they make us wait any longer???

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I wrote about how worried I am about my almost 1 year old, and I am hearing form others that they had to wait till their baby was 18 months before they would evaluate.

WHY??

My baby lost the 2 words he had, he isn't responding to his name anymore, he hardly makes any eye contact anymore, he is in his own zone most of the time. He does this stimmy thing with his hands, likes to smoosh his face into things, no pointing, no waving, no gestures at all.

WHY, with all that, would they make us wait 6 more months?? I could almost see if he never had eye contact or responded to his name, or if he never had any words...give him a few months to develop. But having had it and lost is, aren't those major red flags???

What are my other options? Are there private places to do early evals? I cannot wait 6 more months and watch him slip further.

I am, regrettably, not very up-to-date on recent research, so others might have more recent findings, but I do think that the "earliest" they have been able to reliably detect ASD is 18 months (again, if I am wrong, please anyone share). Maybe that is why they are asking you to wait? I know when my daughter was diagnosed, 24 months was considered "early." I think it may also be related to the fact that many babies do not have language at 12 months, so there is no evidence of delay. Can you find some kind of physical delay somewhere? At least that might get someone in there earlier.

My daughter was much older when I taught her how to point, but I used some basic shaping. I started by standing very near what she wanted (grabbing distance) so that she would reach for it. Then as she was reaching, I'd take a step away so that she had to reach her arm toward the item more. Soon she started reaching for things much sooner than when she was in grabbing distance. That is when I started shaping her hand into a point gesture. Then when she would start to make the point gesture by herself, I started prompting her to point at what she wanted without moving close to it first. It took her quite awhile to get it and for a long time she would do things like point with her thumb or just pump her fist at something she wanted. Of course, the whole time I did this, I was talking to her about pointing, and why we point, etc., but she initially had poor receptive language so I don't even know if she understood any of it or not.

Of course you can have him evaluated privately. I think most centers who will do evaluations via EI probably also have some kind of private pay option.

I am sorry you are going through so much stress

Are you saying Early Intervention has refused to evaluate, or just worried they will refuse?

You don't need an evaluation for ASD to get services, you just need professionals to document that there are delays that justify services because it wouldn't go ethical or appropriate to provide services without some kind of need.

Don't worry about the stimmy thing. If he stopped trying to talk or babble, I would start with the pediatrician. Say you are worried he doesn't seem to be responding to you, but be open that in a 1year old, they may focus on his ears and health first before considering autism.

It would scare me a lot too, if I felt my baby had stopped responding. I would have him straight to the pediatrician, and if you feel they've cleared him health wise, I think that legally, if you ask, EI has to evaluate. If there are significant enough delays, they provide services all the time to children without a formal ASD diagnosis. That's in the US, I think I remember that you are in the US, I apologize if that's incorrect, but imagine someone else can advise you if you want to post what country you are in.

Some kids are slower than others so the doctors want to do the wait and see approach. They would hate to diagnose and then the kid "grows out of it" and it would mean they never had it to begin with. My son was borderline delay in one area of things when he was an infant and the nurse wasn't too concerned nor was I and he is perfectly normal. It could be I goofed up with the child development questionnaire or he really was that but who knows. But sometimes kids do catch up and I sometimes think doctors are too quick to label.

If you are that worried and it sounds like your kid has lost too much of his milestones, I would take him to another doctor. Some doctors give you that BS and sometimes parents know best.

Use what will get the doctor's attention, don't try to slam the doctor with too many worries. Doctors, like schools, tend to switch their attention to us, the parents being the problem when we appear to be too anxious, and they try to solve that problem by reassuring us everything is fine. Which isn't reassuring at all, and round and round we go, feeling misunderstood because we are.

"Doctor my baby seems to be responding less and less to me and the world, can you please do something" is a HUGE red flag no one wants to miss. If that doesn't get the doctor on your side, I would get another opinion. But I think it will.

Health problems sometimes can lead to regression, and some are easily remedied. I know this will be hard as you are worried about autism, but from the professionals point of view, it won't seem to matter if they diagnose autism at 12 months or 18 months. To get help now, stay away from talking labels, talk about baby not seeming to progress and not seeming to respond, that is something they won't know the cause of and will worry much more about catching now. And your goal is someone helps now, so just go with how you can best reach the professionals. Not with what ultimately this will be called.

thanks, yes I am not concerned about a label rather just getting some help started now. I have his 1 year visit scheduled for 2 weeks, but have already called EI. I am in the US, so I know they have to come and at least do intake and some sort of eval. I was told recently by a mom whose son was diagnosed not too long ago, that they made HER wait till he was 16 months, that's why I got upset. I don't want to wait.

Physically, he is ahead of the game, he is already walking and climbing...he did all his physical milestones early too. So no chance there.

Speech wouldn't be given to a baby his age, I am more concerned that he has lost his skills, and the 2 words he already had. EVERY site I visit says at 12 months, if no gesturing, like pointing, waving, etc or any LOSS OF SKILLS to get evaluated immediately. So why then would they make me wait till he is older?

Maybe I am just getting ahead of myself. I just don't want to wait or waste time. I will pay privately if I have to.

its just maddening when you see your child slipping away in front of your eyes and its going to be a fight to get him help now.

I understand. The system makes you wait and worry and the child fail before they will intervene.

I used a combination of public and private services. It's a relief when your child does not qualify for public services to have someone still available, and confusing why they aren't through the public system. But if you can go private, don't waste your energy worrying about why.

If there are feeding or swallowing issues they do provide speech. Does he babble? If not, that might access public services.

But private or through insurance regression is likely to be an adequate indicator to justify services. It's only through the public system where the child needs to be a certain percentile in order to qualify for services, I don't remember what it was, but it's kind of restrictive.

On the bright side? The people I paid, I chose. And they worked for me. Which means they were happy to spend time explaining what they did and happy to have me observe, they gave me guidance what to do when I had questions, they did not make me feel unwelcome, or stupid. There are great people out there who work for the public system, don't get me wrong. But if you need to go private, there are definite positives in terms of the help they can give you as a parent understanding and following through on what they are doing that works. And on average, the private speech and OT have been more effective for my kids than the publicly paid for.

Glad you're not letting yourself be paralyzed by the system and are taking charge of this. Will y post what happens?

I will absolutely post what happens. I am hoping to hear back from EI on Tuesday the latest, but tomorrow I am going to call the local young autism school in my area to get some ideas. I already have one child on the spectrum, it runs ramped in my family, with all that and all his symptoms, its a no brainer to me what needs to be done. Getting it all in place is what is going to take some work.

he does make sounds, he used to babble like he was having a conversation with us, then he started using NO, and then All Done, and I haven't hear No in about a month, I haven't heard All Done in a few days, he makes sounds now, but nothing like the babble he used to do.

Babies pick up and drop words all the time but I understand your worry with his babbling less, that is very concerning. But there are so many things that kids can have problems with, this is something if he has, you know what to do and you will do what you need to to support your child.

Good luck with the EI people! I hope they offer you information and understanding!!

Usually it comes down to money. It costs money to provide services, and if there is a perception or a reality that a large percentage of children with a delay at age 12 months spontaneously catch up by 18 months, then they don't want to spend money on services for those who would've recovered without intervention. Funding is limited, so they want to prioritize kids 18-36 mo who have a clear and more severe dx.

I think some researchers doing sibling studies have noticed differences as young as 6 months in those who are later diagnosed, but the science has not yet come to a consensus on diagnosis this young. You might look around to see if there is a sibling study in your area, since part of the study process is to do an eval. Also, have you done the M-CHAT questionaire yet? You can find it and the scoring online, and I think it starts at 12 months.

If you are considering paying privately, I would suggest looking into a DIR/Floortime therapist (they are usually speech or OT). They focus on encouraging and extending interaction and engagement with other people.

If your situation is different then the other parent's (your child had regression, and hers did not) then I think you may be getting ahead of yourself. it is easy to do when you are worried. You do not know what they will do, yet. Also I do not know if your friend has an older child that is diagnosed already as you do (I am remembering this right, I hope) but that may figure into the calculus, as well.

I would have posted all sorts of reassuring words about how it is hard to tell and so on and so on, but you are a parent who has been down this road, and not someone worrying because of too much advertising. If your instincts tell you now is the time for action, then get it done.

Meantime, do you have any idea what could be triggering these mild withdrawals? Is he becoming sensitive to noise, activity, anything? If you can think of any way to make his world feel safer to him, so that he is more willing to engage in it, that is what I would do.

I have some good news for you - the importance of early intervention has been overemphasized.

The only research that has found an measurable difference between early vs late intervention has involved age differences of 3 or more years. In the long term, the research evidence indicates that intervening at 11 months as opposed to 18 months makes no difference to the child's outcome. Now, if you waited until he was 4 or 5, then you'd have lost a valuable window of time.

The people who market autism interventions want you to buy first, ask questions later. So they make it sound like every month makes a difference. The research doesn't back them up on this.

I am a take action type of person. If I know there is an issue I want o start working on it NOW. Even if it wont make any much of a difference, it makes me feel at least I am doing something about it.

I hope because he has regressed and LOST skills that they will not make him wait...even if I get someone here once a week until he is a ew months older, that will be a success for me.

UGH the unknown is killing me.

as for what could have triggered him I have no idea. Life is same here in the house, only correlation I noticed was as he got better at walking he seemed to get more distant, more into his own world. But that might have nothing to do with it. Could just be coincidence. He has AWESOME motor skills, he can climb the entire staircase (obviously with me hovering behind him), He had no issues with tummy time as a baby he loved being on his belly was super strong sat up at before 5 months, crawled at 8 months and started to pull up an cruise about the same time he crawled, and started to walk the end of 9 months. He is a huge climber now. He doesn't like to be held, wants to get down, seem like he is always on a mission, and my BIGGEST concerns are the lack of eye contact that he once had great) and the lack of responding to his name (which he used to do great).

I understand wanting to know and wanting to do "something."

There is a lot you can do, proactively at home in terms of interaction. We did a lot of it sort of accidentally when our son was younger and his diagnosis was questionable/in limbo. You can see what your child needs and work on it, and I have a feeling (though I do not know it) that working with loved ones has its own function in terms of bonding. Obviously, your child will have to know how to interact with other people, but I think just you working with him will provide enormous benefit. I really do believe the early trust that builds up between parent and child is important both now, and later.

It doesn't count as "nothing."